Sorry, this has to be very brief, as it’s late at night and I don’t get enough sleep as it is! Just wanted to drop a quick explanation as to why you’ve not heard anything recently.
Unfortunately, Neil has now lost the ability to type. He is still able to write via some very clever voice recognition software, but in order for this to work, he needs the house to be quiet! This is impossible…
The last thing I had time for was writing a post on the blog, but Neil wanted me to put something down because people were starting to become anxious that they hadn't heard from us. I was too exhausted to write more than this, but I feel I can’t just say that without painting a bit of a picture as to why.
Any new parent is exhausted from broken sleep, but the few quiet hours of the night between teething were spent lifting and turning Neil's heavy body so that he might get a chance of some rest. There was one night we spent over an hour trying to find a comfortable position for Neil to sleep.
MND stops you being able to move but you can still feel everything, it's very cruel. He wasn't a big man but his legs were a heavy dead weight, and he couldn't lift his hips either. Just as despair was kicking in for both of us, Oscar woke up crying. I cried and Neil cried.
This was our quiet time, our time for rest before the challenges that daytime would bring, which would start with negotiating the best way of getting Neil out of bed without him slipping off the edge. Then how to get him back up when he did (which happened a few times) and what to do with Oscar while all this was happening. Some mums have the time to pour over whether a playpen is good or bad for their child's development, but I needed mine for safety so that I knew Oscar was OK while I was dealing with an emergency elsewhere. I could hear him screaming to get out, but he was safe. There was a period, before help kicked in, where I spent a lot of time running between rooms, constantly questioning if I was prioritising the right one.
So there wasn't just physical exhaustion. Emotional exhaustion could be just as draining, and no matter how hard I worked to keep both of them safe, I knew one of them would just keep slipping off the edge. – Louise (2013)
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