Alex has been home for 7 weeks now and it is wonderful. To be the 3 of us again and not have daily hospital trips feels like we have a little bit of our life back again. It is a different life from the one we lived before but it’s our life all the same.
So many families that go through the pain of brain tumours never get the chance to be together under one roof and so I am so thankful….. But it’s hard. I knew it would be and yet (a bit like childbirth!) nothing can prepare you for it.
The realities are that I sleep with one eye open, get up early to organise medication, juggle motherhood and care (to make damn sure our daughter has the wonderful childhood she deserves and that mummy & daddy planned together) and most of all…. Sit quietly and very alone each evening. I could be surrounded by other people and yet still feel desperately alone because he is my soulmate (I refute any claims that they don’t exist but that’s another matter!) The loneliness of not being able to talk with Alex can be almost unbearable. Admittedly he very rarely got a word in edge ways before, but now…. What I would’nt give to hear his voice! For him to tell me I’m doing ok, doing the right thing, doing what he wants. Mostly I miss his cheeky smile and his laugh – not the average laugh everyone else saw, but his totally at ease, only in front of me ‘geeky laugh’.
But when you are in love with someone as much as I love our Alex ( and daddy!), nothing will stop me caring for him to the best of my ability, everyday of my life….. Because sometimes, I get that smile, or kiss, or few words and it all feels ok.