I plan our future, however long that may be and Chris smiles and complies, 'You are the homemaker' he says, you know what to do. I feel sad to have to take control, be his voice, his communicator, plan our life with MND, while he just takes each day as it comes. This may seem strange, but I feel honoured to be the one who will ultimately care for him and yes I have some idea of what is to come and no it won't always be easy, but caring for him, well that has always been easy, he is an easy man to care for.
Sometimes I want to scream and shout and swear and blame someone, something, for taking my husband from me so cruelly, sometimes I don't want to be brave or strong or marvellous. I want our life back, our future back. I want Chris to still be farming, to still be doing what he loves. I want to be moaning at him for working such long hours, I want to be cooking him those huge meals he loves, baking all those cakes he loved, I want to see him ride a horse again, I want to walk for miles with him. I want to grow old with him and for him to meet his future grandchildren one day.
It is a blessing I suppose that thoughts like that don't creep into my head too often, there is no point as dwelling on what should or could have been taints the pleasure in the now. Inspite of MND and inspite of what it is doing to him, we still laugh a lot, some times at MND itself. For example Chris laughs at his floppy feet at night when I put his bed socks on as his legs and feet are so cold. Bed socks? Who would have thought it, he could have moaned about something like that, but no, Chris being Chris he just laughed.
So when people say I am being brave they are wrong, I am only as strong as the man I married. Yes, I care for and support him, but without him even realising it, he is still doing the same for me. I am brave because he is brave and I am strong because he is strong and I laugh because he laughs and when scary stuff happens like the choking we get scared together too.
I've said it before and I'll say it again, this disease will steal Chris's ability to walk, talk, eat and breathe for himself, but with every bit it steals, his spirit grows stronger. He will fight till the end, I know he will, but he won't have to fight alone because I and all of our family, will be fighting it along with him.
