Joy and Grief

Today, I should be seriously happy.

My latest book, Omission, is finally out, and I’m so thrilled to share it with the world.

As I got online this morning to start work for the day and get some things done I didn’t get done yesterday, I was slapped in the face.

A little boy, Rowan Windham, all of 10 years old, passed away overnight.

I’ve never met Rowan, but I know of him. And he and my son share a special set of circumstances: both went 2000+ miles to Seattle to undergo bone marrow transplants for the same disease, Shwachman-Diamond Syndrome. The difference is, one got to go home. The other got to go to Heaven. 15589817_10102662315427538_1330244952191687796_n

This morning, instead of wanting to spread the word about my book, I’m crying for this little boy’s family. I so want to hug them, even though I don’t know them. And just be a shoulder for them to cry on.

At the same time, I feel a lot of guilt. Why is my son healthy, and they’re planning their son’s funeral? It just doesn’t seem right. No child should have to go through what my son and Rowan did.

Living with the knowledge that your kid may not outlive you weighs heavily on a parent’s heart. In the 6 years I’ve been in the SDS community, I’ve seen too many kiddos–and adults–lose their fight. Some are just a glancing blow–a name, an age. Others, like Rowan’s, are a sucker punch right in the solar plexus. They leave you raw.

There are no words for what Rowan’s family are experiencing today. If you read this today, in December 2016, or five years from now, say a prayer for them. Whether Rowan’s passing was yesterday or a decade ago, there’s a hole where he used to be.

One that will only be healed when they join him in Heaven.

If you want to donate to support research into Shwachman Diamond Syndrome, you can support the following organizations:
Shwachman Diamond America
Shwachman Diamond Syndrome Foundation

And, oh yeah, you can buy my book on Amazon and all other e-tailers. I feel a little guilty for even mentioning it today. Watch this space for more on upcoming events surrounding the release.


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