I have to share it all, the highs and the lows, no matter how painful, no matter how exposed it makes me feel. I am not always strong, I am not always brave. Today is one of those days. Read and forget, tomorrow is another day.
I am surrounded by those I love and have never felt so alone. Our children are growing up and we are no longer the centre of their universe and although that's as it should be, it is always difficult to accept.
Especially now. I am over whelmed at the thought of losing Christopher, it is like my Berlin Wall has crashed down and I cannot stop these emotions from flowing free. Every minor scermish from life sets off the tears and underneath it all is a grief for a future lost with my husband. I cannot bare to think of my life without him in it.
Even though I have my lovely children I just see a empty loneliness ahead. I watch this f*****g disease taking a bit more of my darling husband each day and it steals a bit of me along with it. This was not how it was meant to be. Why my darling Chris? Such a kind gentle soul and I know, why anyone, but at this moment this is my world that is being shattered, my loss, my grief, my sadness.
The dinner table is full of laughter and bustle at the moment, but I cannot enjoy a single morsel as Chris always quietly takes himself away and busies himself with something or other, isolated because he cannot join in such a social activity and finding it too tiring to join in with the conversation. Momentarily it is quite easy, just for a moment or two, to forget he is there and then I remember and ask how he is and he nods OK and smiles his smile and I then I feel such shame and guilt at doing so.
At night we lie in bed and hold hands, a gentle act of intimacy, of never letting go. Chris propped up so he is not suffocated by his weakened chest muscles where even me leaning against him causes him distress. MND steals more than the obvious. Two hands holding on to life and love for all it is worth. Even the warm embrace of a comforting hug has been stolen by this disease.
Hearing the joy of our children in their new and blossing loves, reminds me of what we once had and in the gladness of hearing their happiness I am reminded of what we will lose.
For now the sadness is all consuming.
