Saturday 20 June 2015

No. 198. 'Fear and excitement.'

am writing this after watching Chris struggle with his throat spasms. They have been going on, on and off, for the past couple of hours. I have given him two halves of a Lorazpam and he has settlled a bit. Chris has had a little bit of a cold and he has sounded bubbly in the throat for the last two days. The spasms this time seemed to catch his gag reflex and Chris brought up from his throat a load of mucous. I think it must have just been sitting there in the back of his throat. You or I could cough this up or swallow it down, Chris can do neither, so this must be the only way his body can get rid of it. It is scary and unpleasant for him and yet another new thing we have to learn to deal with.

Hopefully Chris will have a good night as we have to be up early tomorrow, infact we have to leave for Perranporth before 7am so that Tamara can take part in the MNDA's JumpFest. We are praying for good weather. Tam has always wanted to do a tandem parachute jump and 'jumped' at the chance when it arose. Cakes have been baked and raffle prizes bought, hopefully it will be well supported and some more much need funds will be raised. Tamara has raised over £600 herself so has smashed her £200 target.

What a mix of emotions to deal with, fear and concern for Chris, excitement for Tam. Always constantly on edge wondering what curve ball MND will throw next.

Still, we will enjoy tomorrow, and will excitedly watch Tam and probably feel as nervous as hell at the same time, as she jumps out of a plane. We will catch up with our wonderful MND family and enjoy the change of scene. 

Our whole life revolves around this damn disease, but it is not all doom and gloom, it has strangley found us friendships we would never have known and given us experiences as a family we would never have tried. 

I guess we all have to take the good with the bad.