The Open to Hope Foundation published a post from a parent whose child died of a terminal illness. She talks about her grief and facing the reality that her child's life was ending.
If the doctors have the courage to speak the unspeakable and tell us what no parent ever wants to hear, they give us the gift of quality time with our children. We hope that the web of support they have given us through treatment doesn’t end with this new phase of life.
For those of us who choose to take our children home from the hospital when western medicine has failed, we are not taking them home to die…we are taking them home to live. We bring them home to live and we protect them with the fierceness and strength of Mama Bears, Our hearts open wide, as we hold all the hope of the universe inside. We take them to the snow, the zoo, Disneyland. We try and compress a lifetime of happiness into the little time we have left.