Jolene Philo > Quotes

“The biggest lesson we learned is the same lesson you will learn as you deal with your child’s chronic condition: No one knows the nuances of your child’s health like you do. When you think something’s wrong, it probably is. And you are your child’s best witness. It’s up to you to pursue the matter with grace and firmness. It’s up to you to describe what you see happening. Speak calmly and knowledgeably. Don’t cast blame. Don’t be unreasonable. Just tell the truth about what you observe, and don’t give up until you get a satisfactory answer. Once we started to do that, the doctors listened. In fact our pediatrician apologized about the Fourth of July phone call and said, “If I ever have another patient with this condition, I’ll refer the parents to you. You’re better experts about this than I’ll ever be.” The truth is a powerful witness. It saved our child’s life. It can save your child’s too. Dear Father, make me an expert about my child’s health. Help me be a good observer of the truth and a good communicator with the doctors when I sense something is wrong. Keep me from blaming them when they can’t find the answers. Give me strength to speak the truth until they do.”
― Jolene Philo, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children