The president of Hospice and Healthcare Communications, Dianne Gray, speaks with the Association for Death Education and Counseling (ADEC) about the process of having a child that’s diagnosed with a life-limiting illness. Her condolences come first. There was a time when Gray herself was the parent of such a child. “Get ready for the ride of your life,” she says. There will never be a time again when life seems limitless. There won’t be birthday cakes and candles where everyone looks forward to the future with eager anticipation. Every day is a gift now, and the entire family will get a fast lesson in what it means to recognize mortality.

“Let the dishes pile up in the sink,” she says. Just let the fresh air in. There’s no better time than now to enjoy your child’s laughter, the smell of their skin, and to eat popcorn in bed. Laugh as much as you can, take pictures and build memories. Take the kind of photos that you’ll miss one day—those of kisses and hugs. Now that life isn’t expendable, you need to readjust how you live each day. The good, hard cries will come, both for your child and yourself. It’s not just your child’s life that’s ending, but also your dreams. But now it’s time to get up.

A New Kind of Life

Make the most of life’s toughest lesson: Life is short. There will never be a day you take for granted again. Also listen to your intuition. It’s telling you a lot. There’s a community that loves you, one that’s bigger than you can imagine. This community loves you, even if they don’t know you and you may not recognize them. They know about your burden.

Reach out for help, even when it seems totally ridiculous.