What a Special Needs Parent Wants Mark Zuckerberg to Know
The journey of a special needs parent can at often times be very isolating. Until you have walked in our shoes, you can empathize and sympathize all you want, but you just cannot truly understand the chaos of emotions that make up our daily existence. Like everyone, I have good days and bad days. However, in the last two years, my bad days have revolved strictly around my son’s condition, whatever that condition might be (but that’s neither here nor there).
My son has no diagnosis; he has global development delays with no known cause. So it goes without saying that any new symptom or sickness has me frantically Googling.
I have subsequently developed quite the torrid love affair with Google. It’s been, to say the least, a love and hate relationship. On one hand, much to a medical professional’s dismay, it allows me to be better informed and to advocate and push for my son. Before his appointments with specialists, I go on a Google rampage, arriving prepared with a list of questions and ready to suggest and push for new tests.
Unfortunately, Google can be quite the b*tch, and she doesn’t always have nice things to say. She can be comforting and instill you with hope, but with a click of the button, she can just as easily rip it away. Unfortunately, in this era of disinformation, Google is not always your friend (at least not the kind you want to invite over for dinner).
My Google benders have been too numerous to count, and they all too often end in “information overload,” leaving me more confused, scared, worried and alone than when I started. You see, the burden of the interweb is that information is always within reach, and you feel you should be taking advantage of all the information and stimulation as much as you can. The ugly irony is that we have more “friends” and know more about them by sadly by spending less time with them.
However, there is beauty to be found in this “disconnected” connected world. While I may feel alone amongst my family and peers, on the Internet I am not alone in my struggles. Within the labyrinth that is social media, I have discovered my “safe place”: a private Facebook group of over 3,000 other parents also running the hypotonic gauntlet; 3,000 other parents from all over the world, with a wealth of experience and knowledge who understand exactly what I’m going through.
Like me, many of them have no diagnosis for their child. Like me, they battle the unknown and the anxiety that comes with it. These complete strangers have become my extended family, lifting me up when I feel down and supporting my son through all his little triumphs and “milistones.”
So thank you, Mark Zuckerberg — thank you for creating this amazing little community that allows us to support each other at times when we need it the most.
But most of all, thank you for reminding me of the importance of the human connection, which truly can transcend space and time.
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