I am getting used to cleaning Chris's PEG now and the pain is easing too for him. It is still oozing, but that is normal I think. Chris 's MND nurse Tracy was at the luncheon and we had a little chat. She is very supportive too, we really feel she has our back.
It is a strange thing this disease, it is horrible beyond belief, but the weirdest side affect is all the wonderful people we have met because of it.
Our girls were talking to each other the other day. Tamara is Chris's step daughter, but he has brought her and my 26 year old son Jordan up since they were tiny and they adore Chris. Her and Chloe were talking about when they marry one day and that they want Chris, to walk them down the aisle. Tam is 24 and going steady, but Chloe is only 19 and is focused on her career and that is how it should be. It dawned on her that Chris might not be around when she meets someone and gets married one day and that made her very sad. I told her that no one knows what the future will bring. We all have to try and take this one day at a time and to always have hope.
I know Chris has thought about things like that and they are the things that upset him the most, all the futures he will miss out on. I know there is always uncertainty with anyone as to whether we will be around for the big things in our children's lives. With MND though you just know you most likely won't be. Most people only have a life expectancy of 2-5 years on average with MND.
The Stephen Hawkings of this world can be counted on one hand. He is very much an exception and definitely not the rule far as MND is concerned. There is nothing I can really say to either of our daughters or Jordan in that respect. We all know MND will win one day and take him from us, but like I said to them all. Chris is not dead yet. It is the here and now that matters and whatever the future brings, well we'll deal with it as it comes.
Today we smile together, we laugh together, we hug together and we love each other together and that is what really matters for now.
