Soulumination.orgBy Brian Braiker
In January of 2011, when her son Ronan was just nine months old, Rapp learned he was dying from Tay-Sachs, a ruthless and heartbreaking disease with no cure. Ronan was given no more than three years to live. He had developed normally for six months until he simply stopped. He would very gradually unravel, fading away from her piece by piece, until his death in February 2013.
Rapp, a powerfully elegant writer, turned to writing to grieve and for therapy. She processed her pain and fear on her blog, Little Seal. And now, Ronan lives on in this touching book -- as agonizing to read as it is imbued with hope and light.
Rapp recently spoke with Parenting's Brian Braiker about Ronan, what it was like to shepherd and protect him, and what she hopes parents of healthy children can take away from her book. Excerpts:
This is one of the most personal and agonizing things one can imagine going through. How did the act of writing help you process and deal with it?
I think it totally saved me. I talk to a lot of moms who lost their children to Tay-Sachs and a lot of them had children right after their child was diagnosed. I did not. I think I used the book as a way of putting life into the world. When you're faced with death, the response is "how do you create life?" It gave me something to do that was a positive thing in the face of something that was just going to end in a horribly sad way.
What can you say about parenting without a future? What does parenting become when your baby is dying?
I think parenting is about wanting your child to have the best experience in the world possible. And I don't mean the most privileged experience. I mean the happiest. There are a lot of devastating things about this disease and one of them is that it goes against all these primal instincts we have to protect our children. But it's also a primal instinct to want to usher your child out of the world with dignity. That's also taking care of your child.
And you found a kinship these other mothers of Tay-Sachs children. You call them dragon moms.
I love those ladies. What's great about this moms' group is that no one is trying to one-up each other, which is a nice relief and change from most parenting groups. They're from all different parts of the world, different economic classes; they're hugely diverse in terms of religion, politics, age, geography. No one talks about things that would normally unite people like church or political affiliations. We talk about "how do you use a suction machine? Did you use a suction machine?" It's grim. But it's people sharing ideas about how to make their kids most comfortable and what's best for their kids and how difficult those decisions can be when you're dealing with end-of-life issues.
What did you learn about the nature of grief and illness through Ronan?
What I learned the most from this experience is that nobody knows anything about anything. There's no norm, there's no right life, there's no right way, there's no right person. All that stuff is completely silly. And it's meant to rank each other on this ladder: if you had a life someone wishes they had, you're a success. Which is stupid. If you're the person doing the envying, you're disregarding the things in your own life.
We all struggle with that grass-is-greener syndrome, fear of missing out.
It really shattered all of those categories for me. It's not like I'm suddenly some enlightened being. I'm not enlightened at all. I don't have any wisdom, it just made me realize so many of the things I was worried about were so silly. At first it terrified me, but now I find it really liberating.
More from Parenting.com: