The End of Anonymity

Something has been weighing on my heart recently.

For the last few years, I have been heavily documenting my life and the lives of my children on social media. When I received Daniel’s diagnosis last year, I gained a ton of support through the CHD community on social media. All of a sudden, an isolating and terrifying diagnosis became a bit less frightening when I connected to dozens of other parents experiencing exactly what I was. I vowed to share our story as a family affected by CHD in order to reach others. Surely sharing with the world is a noble cause, right?

In the past four years since David’s birth, I have shared countless pictures of my children. I documented David’s first steps, his first words, Hannah’s love of dress up, Daniel’s journey through 5 different surgeries before 5 months old. At some point over the last week, I realized that if I continue to share like this, their entire lives will be documented on social media forever. They will have zero anonymity, and the world will be able to see their baby pictures.

This makes me feel uneasy. I want my children to be able to discover themselves and the world on their own terms. Documenting their entire lives on Facebook seems counterintuitive to that goal. If David decides to become an engineer one day, will his employers be able to see him playing with Legos as a toddler? If Hannah wants to be a doctor, will the people reviewing her med school application be able to see her dress up like a princess at 2 years old?

Something I have heard over and over again from adults with congenital heart defects is the fact that they don’t like their health problems to define them. Many teenagers hate drawing attention to their sternal scars, and they hate their parents limiting them in athletics and making them feel “other.”

I was able to speak at a reception for the underwriters of the Heart Ball in Houston, and there I met a man born in 1964 with Tetralogy of Fallot. After I spoke a little bit about Daniel, he came up to me and declared, “I am your son!” When he was born, many babies with ToF died, just as many babies with HLHS die today. Look how far medicine has come, he told me. He said he was confident that the future looks bright for Daniel because he is a living testimony. I asked him about his life as a teenager. He said that he was the youngest of 6 sons, and his mother treated him as more special than his brothers. She never let them play rough with him, and she never let him play sports for fear of injury. As a teenager and young adult, this made him feel bitter. Of course, now as a 54-year-old man he understands, but it took him several decades to gain that clarity.

Here I am, documenting our lives as a “CHD Warrior Family” for the world. I am doing the exact thing kids with congenital heart defects hate– I am defining my life and the lives of my whole family based on a diagnosis. I can imagine Daniel as a teenager railing bitterly against this classification. “I am more than just my heart defect!” he’ll yell. And he will be right.

My misgivings intensified last week when a story broke about Democrat Presidential candidate Beto O’Rourke. I watched the news break that Beto, as a teenager, was part of an “anonymous” hacking group, and he wrote some weird, unsettling stories about running over children as a teenager. (https://abcnews.go.com/Politics/wireStory/latest-orourke-teen-writing-wife-comment-61723064)

Many of my older Facebook friends lamented over Beto’s moral repugnance, but I took it as a warning. Beto seems like an exceptionally bright man with a beautiful family. He is a great speaker, and he has dedicated several years of his life to public service. The fact that some people are drawing all of that into question because of mistakes me made in his teens and twenties should be a wakeup call to my whole generation.

I am lucky that social media didn’t really gain popularity until I was in college, but most of today’s teens have had a social media presence their whole lives. Can you imagine if the sites you “liked” as a 13-year-old were made public with the world? Can you imagine being 16 and having a microphone to the world where you could share you inner-most thoughts? This is reality for most people today.

Will anyone ever be elected president again? Unless you live as a Luddite and shun all technology, there will be click-bait stories about every single politician for the rest of our lives. “So-and-so liked a right wing group’s post on social media when he was 17!” “So-and-so drank alcohol and went to a bar illegally when she was 19! Here are her pics from her Facebook!”

I guess I am rethinking my presence on social media. I still believe in sharing my story. But where does my story end and my children’s story begin?