No.145. Never give in.

Today is Christopher's 57th birthday, I pray there will be many more. People have told me that we should treat each special date as if it were the last, but we can't do that, because it is like giving in. It is better for us to carry on as normal as much as we can, not be in mourning for birthdays that may not happen. I think we would drown in sorrow if we did.

MND is our new normality now though. Chris has been practicing the Eye gaze again, he has found it really hard. If he is too tired his eyes keep drifting so it was difficult for him to keep his eyes focused on one letter at a time. He also tried the dot on the head and the Smart Nav camera. He managed to navigate the page much easier, so maybe that will the best way for him. I expect it just takes practice, he is going to keep trying with the Eye gaze system. They all use The Grid, which is the software designed for speech communication.

Chris has been falling over more too, I have made him use his sticks and trolley walker more in the house and that seems to have helped. The last thing we want is for him to break something. I can't believe it has only been nine months since diagnosis. I certainly wouldn't say the progress is slow.

We will be having a family birthday for Chris. His brother and hopefully nephew too, will be coming over and Kevin is trying to locate the family slides from their childhood as Chris said he would like a slide show for his birthday. I hope he can find them. Chloe is going to Skype like she did last year, so we will all be together in one way or another. Thank the Lord for modern technology in so many ways.

We are not going to treat this birthday as if it were Chris's last, we are going to celebrate it in the hope of many more.

Edit: We had a lovely evening together, Chris and Kevin were reminiscing over their child hood the rest of us laughing and enjoying seeing Chris as a boy and how some things have changed on the farm. Chloe joined in via Skype so along with Jordan and Tracy and Tamara and Karl we were altogether. Pureeing the Chinese didn't work so well and although Chris ate it, he didn't really enjoy it.

I am also very grateful that Chris is always so patient. I forgot to put the stopper back on his PEG tube this morning, so the two syringe fulls of water I just put down it just siphoned out, making him very wet. He didn't say a word, he just let me clean him up and change his top, smiling all the while and then told me he loved me. Well that's good cause I love him too.