"At least he's not suffering anymore."
I heard that a lot after my 14-year-old son, Austin, died in 2005. It's one of those phrases that well-intentioned people tend to say when they don't know what else to say, and -- let's face it -- most people have no idea what it's like to spend 12 years caring for a child, as a rare, degenerative disease robs him of his ability to see, speak and ultimately move, as was the case with my son.
After more than a decade of managing my son's care, I was already familiar with the challenges and isolation of battling a disease that afflicts one in a million people. Not only did it take three years just to find a doctor capable of diagnosing my son's condition, I didn't know anyone who could relate to the profound suffering I had to witness him endure.
That feeling of isolation only got worse when Austin died and it seemed like no one in my life understood that my journey with him, while difficult, was so much more than a nightmare. There were no local support groups or regional organizations filled with parents who'd been in my shoes. The national foundation was focused on a cure and didn't want to address the grief and suffering of those parents whose children had died.
The parents I'd met in waiting rooms had either faded from my life or were now avoiding me. The last thing any parent of a seriously ill child wants is to be reminded of the children who don't make it.
It wasn't until years later -- shortly after I joined Facebook -- that I realized how healing it is to find someone who's been through what you've been through.
Some argue that social media makes death harder for the people left behind. They point to awkward status updates and death notices posted alongside friends' vacation photos as examples. I'd argue that dealing with death is hard with or without Facebook, Instagram and Twitter. If anything, social media is just making it easier for us to see how bad we are at dealing with grief. Because, trust me, well-meaning friends and family were offering the bereaved, clichéd and sometimes-insensitive platitudes long before the invention of the status update.
The benefit of posting those words to social media is that they end up fostering conversations about death and grief that a lot of us tend to avoid. Many of the status updates I see are guttural, honest reactions to the searing pain of loss. While this may be uncomfortable for some, it's ultimately helpful, as it demonstrates what grief really is: a process.
Seeing others deal with death prompts us to talk about our own wishes. Seeing how others offer comfort, improves the way we offer comfort to others. Seeing others reach out fosters a sense that it's ok to reach out, just as knowing that others have experienced what you are experiencing makes hard times easier to endure.
Facebook introduced me to a world of people who have suffered the unimaginable loss of a child and, more importantly, to people who lost children to the same disease that claimed Austin. These parents have been through what I've been through. Even in short status updates offering compassion and camaraderie, it's clear that we speak the same language.
Facebook's also connected me to my son's nurses, his school assistant and many of his friends. Recently, one of my son's nurses, Kimberly, posted a picture of her daughter, Grayson. The name made me smile, as I realized my son, Austin, was also a "Gray's son." Coincidence? Maybe. But it gave us a chance to laugh.
That's not to say that social media -- in its current form -- has all the answers or that it doesn't have some fundamental flaws; it does. It seems wrong to "like" an update related to someone's death. Most people don't want all of their Facebook friends or everyone who follows them on Twitter to know they're having a hard time getting out of bed. Let's face it, many of these mediums put pressure on us to say we're ok, even when we're not.
That's one of the reasons that I've been working with Kathy Eldon -- who lost her son, Dan, when he was killed on assignment in Mogadishu -- to build a social media platform and Facebook app, called Sanctri, that allows loved ones to share memories and connect with others dealing with loss. There are a growing number of sites where people can ask questions, share their experiences and find support when and how they need it.
Platforms like Facebook may not have perfected the process of grieving online, but they offer benefits that we can both learn from and build on. I may not know all of the friends I've made online since my son's death, but now, thanks to them, I no longer feel so alone.
Dianne Gray is the Industry Expert and Content Manager at Sanctri.com, and President of Hospice and Healthcare Communications.