Thursday, 23 January 2014
Dear Alex, Your Birthday, 35 Tomorrow.
It seems a dream, a wild, vivid dream that I have been writing to you since just after your 32nd Birthday, replacing our evening chats with all I have now, writing to you.
I reminisce, over birthdays we spent on a cold January beach in France, with young kids in Whitby for the years we lived there before moving to France. Cakes enjoyed all together, days spent just the 6 of us. Those times have gone.
To have 'gone' at the age of 32 is cruel. To have been robbed of all you had, and oh baby, how much you did have, is not right. Talking to professionals about your 'quality of life' throws me into states of depression and a surreal realm of disbelief. It feels patronising hearing endlessly 'we will get you into bed, we will do this for you Alex, we will take you to the toilet...' I scream from the valleys of my love and my soul 'Please wake up Alex, wake up, come back, be here, now, come back, do all these things for yourself!'
...Knowing I have to humbly accept defeat and let you be 'moved and handled' aspiring for a 'quality of life'.
Resting in the comfort of our kids' acceptance, our kids' love for us as we are.
Seeking gratitude, small blessings, wonderful innocent moments, a stand, a good few hours, a smile, a clear sentence.
I wonder, on the long drive home with the kids tonight, what you may have sad to yourself now, had you have known?
You would surely have told yourself to endure, to tolerate, be patient, keep moving, keep being drawn back to your family's love for you. Not to fear, not to be angry, but to seek control, to physically work harder than you ever have, keep the goal in sight; of being at home with me and the kids.
Your heart and soul, and your spirit would have been broken.
You hold me tight tonight, telling me you love me, love all of us, and a tear escapes from your eye. The kids are watching the TV in the big lounge, we have a few moments alone. You are calm and happy. Heart beat-to heart beat I cuddle into you. Gently talking, you say:
'I cannot see, but I know I will one day, I just cannot see at the moment...if I could see again, that would be the most important thing for me, but I am not the most important person in the world'
I see it will be OK to probe a bit about your sight, after much questioning, gauging whether it is becoming too much or not, you are very clear, very conclusive; you see nothing, but it is not black, grey or white, it is a pinky kind of light around you all the time, no change, no pockets of light, no figures, nothing like that, just an orangey, pinky light. To me this is better than I have dared think. I imagined it dark, black, always for you. But a slight colour makes me feel better, as if you are less trapped inside an unseeing world.
Baby, I wish and pray and hope so many things for you.
Another birthday here, another year on...And I will keep hoping and praying these things for you.
The photo I have put up, the 'selfie' of us all depicts the tone of the evening, and after this photo is taken, you cuddle all the kids close and say 'I love all you lot, so so so much...'
And, oh my honey, how we all love you...
Pride swells in my chest as I kiss you goodbye tonight. Knowing still, this year will be a good year...
Posted by Manic Mum at 22:39