‘The internet will have moved on, but I still have my son’ — NJ mom in social media firestorm
MIDDLESEX BOROUGH — In the Chandra household, the definition of the word "normal" is fluid at best.
Even before her son Ethan was born, Alison Chandra said she knew he would have a medical condition that would likely shorten his lifespan and bring countless unforeseeable complications. Three years later, as she works to raise two kids, Chandra is learning the benefits and the pitfalls of social media.
Last month, Chandra took to social media to express her relief about her young child’s health insurance — with a picture of a $231,000 bill she said she could never manage if federal lawmakers strip away healthcare protections.
While the reaction to her post was mostly positive at first, it has not been good lately. She received death threats and strangers lobbing insults at her and her family. Calling the reaction "unexpected," Chandra told New Jersey 101.5 it has not changed her goals or how she approaches her life.
"I'm trying to raise two kids, one of whom may not get to be an adult," she said. "But if he does, I want him to be an awesome adult."
Chandra spoke to New Jersey 101.5 having just returned from vacation and in the middle of getting dinner ready, just like many other families throughout the state. She said seeing the negativity that has come from her posts has been a lesson in itself.
"After my piece dropped, one guy came on and said I should have expected death threats because this is the internet," she said. "As if death threats are now an acceptable part of modern discourse."
She said the past month has made her wonder whether in a time before the internet people would say the things they have to her face.
When her son Ethan was born with heterotaxy syndrome, Chandra said the diagnosis and the time since his birth has come with its own lessons, which she said has helped her work through the backlash from what she thought would be harmless posts on social media.
"I think to some extent this life teaches you to compartmentalize," she said. "You have to be able to go into fight mode."
For some kids with heterotaxy syndrome, Chandra said that can mean spending a year in the hospital.
"The surgery times are really intense," she said. "In between you're always fighting. So it's more of the same."
Even as total strangers pass judgement on her and her family, Chandra said she is only thinking about her family and keeping them safe and healthy.
"This is the way I have to be because if I let myself feel it then I can't stop feeling it," she said. "I still have him tomorrow. The internet will have moved on from me, but I still have him."
If there is any good to come from the popularity of her post, Chandra said it is that it is bringing attention to a relatively unknown condition. She said she serves on the board of an organization that works to bring together families of children with the condition and that they used to joke they needed to go viral in order to raise awareness.
"Then it happened and they're all like, 'Better you than me'," she said with a laugh. "We're all totally shell-shocked by it."
Chandra said that her first post was meant to be a discussion about health care in the country.
"I think what it has kind of done is cemented in me the understanding that this whole being politically active or not being politically active isn't really a choice if we want this country to work," she said.
While she will be keeping an eye on the work being done by Congress on the new health care bill, Chandra said that whatever the end result of that is, there is still much more work to be done.
"I talk about my 3-year-old and people say they want to send him a bullet," she says. "We've lost our way somehow."
"I don't think I can claim to have the luxury of sitting back anymore and letting it happen," she said. "You don't get to look ahead with heterotaxy. You don't have a guarantee of what tomorrow will bring. You take each day and see what happens."
While she figures out what her next steps will be when the backlash from her post subsides, and as she watches Ethan run around the yard with his 4-year-old sister, Chandra said she has the same concerns as every other parent in the summer.
"Right now, the only think I have to think about is that I have to put some sunscreen on him," she said.
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