"If I could, I would choose ignorance and health over experiential wisdom, unfortunately, in his life and his death, I've learned big lessons about how to support other parents of chronically ill children, what to say, and even more so, what not to say."
People mean to be kind and comforting and do not realize how painful their attempts to be reassuring can be. Instead of "don't worry," "have faith," "you're so strong," just, "can I get you anything?" or sit quietly and let them talk.
10 Things Not To Say to a Mom Of a Chronically Ill Child
You have come to the right place, and we are glad you are here. This is a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives, mourning, hope, and despair. We want to hear about about what you wish you had known or done differently, what you wish those around you had known or done differently, and what went right. We will never tell you to move on or find closure. "What cannot be said will be wept." Sappho
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