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March 12, 2013

A Grieving Dragon Mom's Advice About Love

I carried the folded, fraying article from the New York Times in my purse for months. Occasionally, I would find it, unfold it and read Emily Rapp's words about parenting her son Ronan.

This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

I have written about Emily Rapp before. But my words do not come close to touching hers. Her elegant contemplation of what it means to have a dying child, to love so completely has stayed with me long after the article disintegrated.


Rapp’s son had Tay-Sachs disease, a degenerative and fatal disease. Once Ronan was diagnosed at 9 months, she knew she had limited time with him. So she focused on loving her son completely, unconditionally, for as long as she had him.

And it wasn’t that long. Ronan died a month ago before he turned three. His death leaves Rapp with her grief, but also with the knowledge that Ronan wasn’t trapped in his body anymore.

Rapp calls herself a Dragon mom because dragons are mythical and scary, just like mothers of dying children.

During Ronan’s life, Rapp wrote The Still Point Of The Turning World. She says the writing of it was what helped keep her sane. As both an insider and an outsider, she has a unique perspective on parenting. And the lessons she learned as a Ronan’s mother, and as an observer of other parents are poignant:

“Your child is not a project,” she says in this moving interview on The Today Show.  (I really recommend you watch it, even if you need to grab some tissues.) She wants parents to loosen up a little, to let go of the little things. 

She writes on their blog:

This is what parenting a child with no future has taught me: Nothing is forever. There is only now, the moment, the love you bear, the knowledge that loving is about letting go, and that the power of a person’s grief is a reflection of the depth of their love.

It is so easy to caught up in the cycle of worrying about the little things: whether they eat enough vegetables, missed goals and science marks and if their hair is brushed. But occasionally a wake-up call is sounded to remind us that in the grand scheme of things, these things don’t really matter.

There is very little we can do other than offer love.

I am so sorry for Emily Rapp’s grief, but I am thankful for the message that she continues to send: love purely; love for the sake of loving; relax. She writes about the hardest things we can imagine with a clear voice. We owe it to Ronan to listen.

Want more chaos? Last year, I waded into the sleepover debate, which kind of surprised me existed at all.

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Emma WavermanEmma Waverman

Emma Waverman writes five days a week about the chaos of modern family life here at MSN.ca. She is the co-author of the family cookbook Whining and Dining: Mealtime Survival for Picky Eaters and Families Who Love Them and is hoping to one day to finish her certification as a parenting coach. She lives with her three kids, ranging from tween to grade schooler, and husband in Toronto. Emma has written for a variety of national parenting and lifestyle magazines and papers. When she’s is not making typos, telling you what she thinks, and thinking about dinner - you can find her on Twitter at @emmawaverman. You can contact Emma at embracingchaos@hotmail.ca

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