I think seeing Vic trying to remain cheerful and to smile through her pain is almost harder than seeing the raw pain on her face. I know Vic so well. When her voice becomes shrill and loud she is suffering bravely.
The sad thing is that Vic thinks we cannot see through her act. She especially tries this act with the boys. She will try and joke (not that she ever had a great sense of humor) and tell long winded stories. Long winded because I think she somehow loses the thread of the story along the road and fills in the blanks with words.
Even as a baby Vic used to babble. She used to lie in her cot and ooch and gooch…She was such a happy little thing. Laughed from her stomach. When she turned ten she started experimenting with her sense of humor…It was quite painful. She could never get the punch line right. At 37 she still can’t get it right.
With 80 operations under her belt Vic developed almost a manic fear for the theatre. She got to know the theatre team very well. Her anaesthetist, Richard Spark, is one of the greatest human beings I have ever met. Brendon Bebington, her surgeon, would hold her hand whilst Richard administered the anaesthetic.
Vic always insisted on telling them a joke in theatre. We would make her practice the joke for days!! Even in the holding area of the theatre we would make her repeat the joke… We would laugh and clown about to try and take her mind off her fear. Fear that she would not survive another operation and fear of the pain if she did… As they wheeled her into the theatre the tears would come… my tears. I never cry in front of Vic.
I wish I had written down the original joke and what Vic ended up telling…
It is part of the burden of having a terminally ill child. You fear tears because it may lead to breakdown.
Last night Jon-Daniel and Jared managed to have them mother shrieking with laughter. I don’t know when last I heard them laugh like that. It was amazing. For a short while the heavy cloud that hangs over our home lifted…
Today is a very difficult day for Vic. The cold is in her bones. Pain is dominating her mind and life again! My brave child is battling. Maybe tomorrow will be a better day.