Looking for the positive

I think that its only fair that I try to balance my writing with some positive things. There are positive things albeit few and far between. Nattie's smile. Lauren's big-girl hugs. Laughing with friends. And there are positive thoughts.

The most positive thing that I can think of is the care and affection that we received from the hospital staff during Kay's illness. I consider myself very fortunate that I carry no anger or feelings of recrimination for what happened to Kay. I know that we received the best care that the staff knew how to give and for that I will always be grateful.

This is not to say that I accept that what happened was the only possible outcome. In fact I think that Kay's death was not inevitable. Certainly I believe that her nutrition was poorly managed and I also think that the hygiene rules and policy were far to liberal. When I think of how we struggled with her vomiting, sometimes having to have her nasogastric tube fitted 2, 3 or even 4 times in a day, at home, I'm still stunned that we were allowed to continue to nurse her at home under those conditions. I'm still amazed that I was ultimately responsible for causing a solution to her dietary problem to be found, which led to her nutrition becoming stable. I think that a significant component of her deterioration was due to months of poor nutrition and I also believe that this ultimately contributed to her death. Her poor body was simply emptied of the resources it needed to continue the fight.

But I also recognise that we were at the cutting edge of medical technology, a place where things are less than perfect and that, hopefully, the specialists can learn from what happened to Kay and ensure that the next child gets better nutrition, is not sent home so quickly, is not left at home without adequate medical supervision/advice, is subjected to stricter hygiene rules. If that child had been Kay, I think she would be alive now.

Equally, I would do things differently. I would have followed my instincts and insisted that she stay in hospital at the end of the BMT until her weight loss had been solved/stabilised. I would not have allowed (so many) visitors. I would have been quicker to take her back to hospital when she was vomiting so much. I would have made much more fuss about her nutrition, I knew all along that it was a subject of vital importance, I even discussed its importance with the specialists.

But still, I am at peace with all this for I know that everyone involved did their very best for us. I know that they pulled every trick out of the cupboard, they explored off-the-beaten track ideas for treatment, certainly during her time in intensive care. I know this because I know that they saw how dedicated we were to Kay, how much we love her, how we would have moved heaven & earth to save her and thus I know that this is what they tried to do for us.

There's not much else positive that I can think of. Life weighs heavily from minute to minute. We do laugh, we do smile, we do enjoy our children. But the tone of our lives has been altered. It's been blended with a heavy dose of grief that taints every moment. The minutes that bind the events in our lives together are not enjoyable.

Oh dear. I'm trying to be positive and look where I ended up. And even my positive thoughts are cast negatively. I so long for the days when I took happiness and a good night's sleep for granted. I wonder if they will ever come round again? Well, certainly not the "take for granted" bit, but it would be so nice to wake up one morning feeling refreshed after a good sleep and look forward to leading a generally happy day. The problem is that I cannot imagine ever being able to feel like that again. I imagine that every minute that remains of my life will be weighed down by sadness, by loss, by the ache of missing my KayKay.