I have not posted in a long time. I keep thinking up posts but I never seem to have writing time. I do dream of having time to write my book. No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered. The book must portray the immeasurable value of her legacy. It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.
On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice. I was given 20 minutes but I think I took much longer. I wanted people to meet Vicky. The “healthy”, carefree child/woman with a heart full of hope. I wanted people to see how during the last 10 years of her life she was stripped of so much.
And, when she realized that there was no more hope to feed on…
I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain. The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.
It felt almost “clinical”.
How do I begin to share the horror of my child’s journey? My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…
For so many years I did not sleep because I was scared I would not hear her. Physically and mentally I was exhausted. Now…I do sleep but my soul is tired.
I must capture the heartlessness of the medical profession; the lack of counseling; the importance of hope… I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.
But most importantly I must fight to keep Vic’s legacy alive. I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”