Friday 26 December 2014

No.135. "Just a little bit of MND".

 Well Christmas Day and Boxing Day were both good. Chloe and I went to Midnight mass with Chris, I confess Chloe and I went reluctantly, but it was actually really nice and it wasn't too cold in the church either. At least we don't have to go far. 

Christmas Day was lovely with Chloe, Tamara and Karl and Jordan and Tracey all being here with us. I think Chris really enjoyed his brother being here with us too. The dinner went well. I made a salmon mousse for starters which Chris was able to eat and then puréed each part of the roast separately like the veggies and the turkey etc so that Chris could at least enjoy the different flavours. He really did too and even managed some pud all mashed up with custard and cream. I was so worried that he would feel left out while we all stuffed our faces, but he didn't and that was all I wanted. We all had a lot of fun too and had lots of laughs. It was really nice and some more memories were made to put in the bank.

Friday was a chill out day, Saturday was back to party preparations again as we had a large family party on Sunday. It was a lovely evening spent with my sister and her family and Karl's family too who had come down to Cornwall for Christmas, we have met his mum and dad before, but we had never met his Auntie and Uncle and their young daughters.

Before we all started eating Chris and I were having a nice chat with Karl's Auntie and Uncle and I just mentioned that I would get Chris sorted with something to eat first before every one else started and they said 'OK' and disappeared really fast. I thought it a little odd, but then got on with finding foods from the buffet that Chris could eat. Later. on it suddenly crossed my mind that they may have thought that I was going to feed Chris via his PEG infront of them, which wasn't the case. Apologies to them if we made them feel uncomfortable, but we did have a little giggle about it to ourselves later. 

As it is difficult for Chris to get up and mingle and because he eats so slowly, he sat in the same place at the table all evening. I made a point of not leaving him for long. Occasionally he joined in with the conversations, but mostly he sat quietly eating. I asked him later if he felt like he was being left out or felt uncomfortable. He said he did a little, but understood why people found it awkward to talk to him as his speech is slurry and slow. He is a little on the shy side anyway which doesn't help either. He said he didn't mind. I am beginning to understand how difficult it is must be for those who have completely lost their voice.

We did all have a wonderful evening though including Chris and we laughed an awful lot too. More lovely memories made.

At other times Chris had still been a little low, but that was rectified once he was able to get back outside for a couple of hours again. I am still amazed how mostly he stays cheerful. I told him if the roles were reversed I would be moaning like mad. He just looked at me, laughed and said "It's just a little bit of MND". He was being very much 'tongue in cheek' of course, but that is how he deals with it. 

I am in awe of how he does deal with this awful thief that is MND, the stealer of my brave Christopher's body, but it hasn't yet laid it's hands on his cheerfulness and spirit. 

I hope it never does.