I met Emily Rapp on Facebook. We were “introduced” through a mutual friend, Jennifer Pastiloff who thought we would get along famously. And we do, as much as a Facebook friendship allows.

Emily makes a lot of clever posts; some funny, some inspiring. We banter online occasionally; mostly bonding over the times she gets snail mail addressed to her as Emily Ratt. While she grew up the literal poster child for the March of Dimes, I worked out on a Sears weight bench and listened to the cheesy 80’s metal band of the same name. How could I not have an innocent crush on her?

When we first met, I did not know that Emily is a writer. But not just any writer. She is an exquisite writer. As a writer myself, I do not say that lightly. And apparently, I am not alone in my opinion.

Last year, her blog was picked by TIME magazine as one of the top ten blogs of 2012. She writes about her son, Ronan’s battle with a rare condition called Tay-Sachs. Tay-Sachs is a deadly disease that attacks the nervous system resulting in an incredibly short life expectancy.

She details the heartbreaking story of slowly watching her only child die. Her work is both incredibly personal and beautifully lyrical. I have never read anything quite like it. At times, you will walk away feeling like you know her better than you know yourself. You will read her work and you will want to meet her. You will want to hug her. And you will want to hold Ronan just to let him know how loved he can be by a complete stranger. I fantasized about that scenario a lot, but unfortunately, it never happened.

Ronan died yesterday. He was just three years old.

I have never had children, so I cannot possibly fathom what she is going through. I have tried to put myself in her place and get welled up the moment I do. I think about the emptiness of her home. I think about the stuffed animals that lost their friend. I think about how quiet her nights are going to be and I lose it.

I have taken to praying more than I ever have in my life and today I prayed for Emily. And Ronan. And all of those who are feeling his loss far more than I ever will.

Emily does not believe in God and part of me feels weird about praying, like it will not do them any good or something. So maybe, in fact, I am partly praying for myself. Maybe I am praying for the courage to have a child one day and for something bigger than me to protect me from any experience half as intense as what Emily is going through.

When something so inexplicably devastating happens to someone, it is natural for a part of us to wonder what would happen if we were in that situation. We feel through another person’s experience. And then magically, regardless of what God we do or do not believe in, we bond as human beings. Sometimes it takes death to make life feel so profound.

I do not know what I would do in Emily’s shoes. I would like to think I would be strong and manly through it all. But more than likely that is what I would want you to believe while I sat inconsolable in the corner of my son’s empty bedroom.

I do not know if I will ever have kids. I do not know the pain that Emily is feeling. I do not know how God works.

But I do know that I will continue to pray for the two of them. And I ask anyone that reads this to hold Emily and Ronan in your thoughts.

At the end of the day, there is brave. And then there is Emily Rapp.

With Love,


P.S. If you are interested in reading her blog, it can be found here: http://ourlittleseal.wordpress.com/ 

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Comment by Stirling Gardner on February 16, 2013 at 2:17pm

Thanks, Suzi. Such a heartbreaking and inspiring story.

Comment by suzi banks baum on February 16, 2013 at 1:26pm

I too was so sad to read of Emily's loss.

Your thoughts here are important and well stated.

Thank you for letting Ronan's life make a difference in yours.

xo Suzi


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