I’ve been blogging for seven years, and the archives of this blog contain a huge volume of stories about me and my kids, especially Grayson. When Grayson was really little, and especially leading up to his diagnosis, I documented nearly everything about his life. If you followed along back then, you read details of doctors appointments, doctors’ theories on his diagnosis and prognosis, and how many times he threw up a day (in case you’ve forgotten, it was a lot). I’ve made dear friends and secured a support system online because I chose to be open about our journey. And I have no regrets.
There’s an ongoing debate in the mommy-world about children’s privacy online and how much is too much to share. I’ve always been on the more liberal side of the debate- I’ve never felt like I’ve crossed a line or compromised Grayson’s dignity. And I’ve never felt uncomfortable sharing pictures of him or having strangers read his story.
But Grayson is getting older, and I’ve been intentional lately about thinking about what parts of his story might not be appropriate to share anymore. And I’ve also been thinking about the purpose of his story being shared, apart from the support and feedback I get when I write about him.
Of course, my number one concern about sharing publicly about my children online is to protect and preserve their dignity. In 10 years, I don’t want my kids’ classmates to Google them and read anything that could potentially embarrass them or be fuel for bullies’ taunts.
But with Grayson, this won’t happen. And that’s both an overwhelming relief and a heartbreaking reality. If his disabilities were different, and if he were more aware and self conscious about them, the conversation about privacy would be a lot more complicated. I know of some bloggers for whom this is very much a reality: their children will be able to Google themselves and find out what their mothers wrote about them and their struggles. And it’s hard, because a lot of our support comes from sharing with each other, but we do have to consider our children’s feelings and future feelings as well.
I don’t want to post anything about Grayson that I would definitely not post if he was a typical 7 year old. So, that means no pictures of him in his diaper or being bathed, and no details about poop (look, poop is a whole thing when your digestive system doesn’t function properly, but no one wants intimate details about that).
I don’t feel the need to write about every single health issue Grayson faces like I used to. This isn’t “new” anymore, and I rarely have the feeling that I need to document every detail of his medical history in this space.
Mainly, I want people to see Grayson as a person, not a disease. He’s not my special needs son, he’s my son (no modifier) who happens to have Leigh Syndrome.
I’ve had two blog posts go viral this year. You can read them here and here. Both posts were re-published on HuffPo (and one also on Scary Mommy). The second one was shared on News and Guts and within minutes had hundreds of shares and comments. From my stats on this blog and seeing how many times they were shared from those other sites, combined they have been read over 3.5 million times.
Both of these posts feature a part of Grayson’s story, and clearly state that he is the reason I’m so passionate about healthcare being a right for all Americans.
I did not have Grayson’s permission to share his story with 3 million people. He did not give me consent to allow his picture to be shared across the Internet. So was I wrong to do it?
I don’t think so, and here’s why:
Grayson is a human being with intrinsic value and worth. Nothing he does or doesn’t accomplish changes that. No amount of money required to keep him alive diminishes that. If he lived his whole life and not one person knew his story, he would still be precious and valuable.
But I see my writing about Grayson and sharing his story with whoever happens to read it as an opportunity for his life to have a greater purpose. There are people whose minds were changed about healthcare legislation because I wrote those two posts (I have proof in my inbox). People seeing Grayson’s picture gives the implications of a bill a real, human face, and transforms the political into the personal.
Grayson will never speak to millions of people on his own, but I hope that through my words, I do his life justice and fulfill a greater purpose for him.
As Grayson gets older, and the blogging world continues to change, I will have to reevaluate what and how publicly to share about his life. But for now, I feel good about the size and scope of his digital footprint.