I'll let my boy sleep for now, I talked to him so much yesterday I am sure I will have tired him out.
MND is like a Tsunami that just builds and builds and it came into our lives carrying not just MND, but all the professionals along with it to care for Chris and all of the equipment. It has swept everything away forever including my darling Chris and it has just left us behind as a family clinging to a high rock alone definitely feeling abandoned. All those professionals, quite rightly, were there for Chris, not us. I feel I am waiting for a rescue boat to come and rescue us and tell us what to do, tell me what to do, how to cope and get on with my life. The only saving grace is when I look around there are other families who were swept away by previous MND tsunamis trying to survive their lives without their loved ones too and they are shouting out there love and support to us.
It does not get easier as the days go by, it gets harder infact. The missing him, that is so much worse each day. I'll block it out for a while and then someone will phone or a pile of cards will appear in the post and it will set me off again. I know grief is normal and is a process, but knowing I will never see Chris again in this world is just killing me.
Someone came and collected all the feed yesterday that was left, almost a months supply, they said they will just dump it, what a waste. The wheelchair was supposed to be collected yesterday too, but nobody turned up. As much as I would like all the equipment taken away it is all part of that tsunami and it feels like life is erasing what Chris went through and I never want to forget that. He had to live with MND and it ultimately took his life, I must never forget.
I feel almost zombie like the with way I deal with the day. I wander aimlessly picking through the remnants of what's left and all I can feel is devastation and loss. Life will never ever be the same and at the moment I am haunted by what Chris went through those last few weeks, especially the last day, that slow, cruel, death, I shall always wish I could have done more to help him. The really sad thing though was the difficulty he had in speaking, mainly because of lack of breath, he was so tired all of the time and slept a lot and was certainly too tired to use the speech devices made available to him. It meant this last month he rarely spoke very much except to call my name or say I love you. There were so many conversations we should have had and he would just look at me lost when I asked him. I think too, as I wrote once before, he was afraid to cry in case the tears made him choke, so I think part of not speaking was to protect himself from that and maybe me too from any more pain. That would be so typical of Chris, he would not have wanted to upset me.
I have heard a distant whisper in the village as to why I write this, that it can't possibly help me, they are so wrong. Memories fade, I have this past 16 months written down in this blog, the bad times, but the good times too and I do not want to forget the path we have walked with this hideous disease. Plus so many people in the MND world have told me it helps them and that is a consequence I never foresaw. I hope too that I have educated others about MND and how devastatingly cruel it is.
We still need a cure so badly or at the very least something to hold back the tsunami wave for a few more years before it finally sweeps in. Chris would have willing grabbed just a few more years, especially to see Choe's 21st and graduation, to watch her and Tam marry one day, to meet his grandchildren, to spend more time with myself and our family.
How will people ever be willing to help if they don't know what MND is? I hope my blog plays a small part in raising MND awareness.
So yes it helps, in so many ways, to live with and survive this MND Tsunami wave.
