When a Random Facebook Post Opened My Eyes to My Son

Shortly after having my son in June of 2014 and our surprise diagnosis of Down syndrome, I was feeling down and worried. I made the mistake of turning to the Internet for answers, and frankly, there is some scary stuff out there.

I was reading horrible thing after horrible thing about illness and heart conditions and delays. I was terrified. I was doubting my ability to be his mother and doubting my strength.

He was less than a week old and I couldn’t even fully enjoy the beautiful baby I had before me. I would hold him when I was alone and cry. I would cry for the fears. For the possibilities. For the unknown.

I should clarify, I never once didn’t love my son. There were just so many unknown factors that can partner up with a Down syndrome diagnosis and my post-pregnancy brain, raging with hormones, was having a rough time not dwelling on so many negatives.

One day while I was just holding Zak as he slept — I hardly ever put him down back then, as I was so afraid something horrible would suddenly happen (what I am not sure!) — I was just scrolling through my Facebook feed when I encountered a page called Healing Harper.

Unbeknownst to me, this was actually a local family. Harper, who has Down syndrome, was born a few months prior to Zak and was quite ill. She was in the hospital when I came across the page and I continued to learn more about her and her family.

After seeing her strength and the strength of her family,  it dawned on me… Zak is healthy! We are not in the hospital. We are home. If they (Harper’s family) can handle all of that, why can’t we handle a little extra chromosome?

Not only did the Facebook page completely change my attitude toward the diagnosis, but it gave me the idea to start my own page for Zak as well.

After tossing around many names, I landed on calling it Eyes Wide Open,  because mine were. It was a turning point for me. I quickly became an advocate and Zak’s page now has over 3,000 followers. I refer to him as Extraordinary Zak… because he is!

I actually reached out to Harper’s mom and we have become friends on Facebook. We haven’t had the chance to meet in person yet since Harper is still in and out of the hospital. But some day we will.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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