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WHAT FACEBOOK MEANS TO FAMILIES WITH SPECIAL HEALTHCARE NEEDS

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Facebook is and extension of our lives. It is how we communicate, share and find out what is going on with the world. I know that it is my primary source for getting news stories, and the best way to catch up with old friends. There are some people out there that have negative opinions about Facebook, saying that it is killing face to face interaction and verbal communication. What about the moms that are dedicated to taking care of their children and the only daily interaction they can get is with their child’s therapists and doctors. Facebook is a way for them to get the social interaction they crave and a small escape at the touch of a button.

Recently, I was directed to a blog entry written by Rachel Engel. Her blog is called “Tales From the Plastic Crib: One baby’s NICU Journey.” She writes about her son Jackson, who is such fighter. “He’s got a hole in his heart. He only has one functioning kidney. He’s got a little hand, which we call his lucky fin, just like Finding Nemo,” Rachel describes in her blog. I invite you to go and read her entry about what Facebook means to her.

Below piece from her entry:

“Yeah, Facebook is annoying. It’s overused and overexposed.

But, for parents of children who have rare diseases or disorders, special equipment, body deformities, or something that makes them extra unique… it’s the most precious invention, ever.

Seriously. Thank you, Mark Zuckerburg. I don’t think you actually know what Facebook means to these parents.

It means never feeling alone.

Learning your child has been diagnosed (finally) is exhilarating, and absolutely terrifying, particularly when it’s with something you have never heard of, and neither has anyone else.

Guess what? There’s a Facebook group for that.

My daughter was diagnosed with an extremely rare, random and downright weird neurological disorder. Doctors had barely heard of it, and had never seen it. Yet, when doing research on it myself, I found a closed Facebook group of parents with similarly affected kids.

These parents shared their experiences. They shared photos. They asked for advice, and received feedback. For the last two years I’ve been apart of this group, I have watched people post their worries and concerns, as well as their happiness over their kids’ triumphs.

One tiny app on my phone, and suddenly, I’m not alone. These are people who share my fears about everything her diagnosis entails. And, now, with our second’s array of medical issues, I have added four new groups in the last week, each one alleviating at least some of the anxiety I feel for what the future holds for him.

I can talk to and ask questions of people who are going through the same things, even though they may sit in Australia. Videos, pictures, documents, surveys of symptoms; the resources are endless.

For a special needs parent, it’s like being thrown a lifeline. Suddenly, there’s a place you can go at 2 a.m., and ask for help when you’re unsure whether a symptom is normal or not.

And, when you’re scared for your kid, and your friends can’t understand the depth of that, having that safe place of understanding people to vent to is like finding gold.

Thanks, Mark Zuckerburg. Thanks for the lifeline.”

This post was originally published on June 6, 2014 by Rachel Engel.
To read the full post click here.