One of the biggest things I took away from this course was how much my boy suffered and I had no idea.
If I only knew how painful his recurrent pneumonias were, how sore his muscles and body must have been from the clonus due to his CP. When I couldnt soothe his cries, his grimaces and moans. I wish we had been introduced to palliative care sooner. The guilt I feel after this course is immense. Maybe if his pain hadnt been so bad he would have lived longer. in the last 2 years before his death, he stopped smiling and laughing and now I understand why. I wish I could go around and advocate to every Dr that the minute you know the child is going to be in pain and suffering, get palliative care involved
