So I keep a You Tube page for our family videos. It started a little over a year ago. I had just gone to speak to a class at East Field College about Gideon and one of the girls asked me if I had a You Tube channel. At the time I did not. But the kids convinced me it was the cool thing to do, so I went with it. Coincidentally, it’s also called Life with a Happy Heart.
Recently one of our videos titled Blind, Deaf & Windows Down…Again caught some attention. People shared it and in some cases, they wrote articles about it. I wouldn’t say that it went viral but it definitely made its way around the world. (On the site Imgur, our video almost hit a million views.) In fact, we even had several companies reach out, with the hopes of licensing it.
Maybe you’ve seen it? That cutie right there… he’s my son.
Unfortunately, the people who wrote about it on Yahoo News, Metro News, Mirror News, Reddit, and other sites, never actually contacted us. Rather than reach out to us for direct quotes, they took parts of our ReEngage testimony and pieced together something that fit their narrative. Some were okay, but most, without the context of the entire testimony, made us sound pompous. This led to an out pour of comments condemning my family, our decisions and saddest of all, demeaning the very life of our special needs son Gideon.
This will be my only response to those kind of comments.
It takes much more thought and consideration to build others up than to tear them down. When you know that you’re going to bury your child, the thoughts and negative comments of others, really don’t matter. We chose an attitude of gratitude a long time ago because we knew this would be a rough road that not many others will ever face or understand. If people want to rudely state their opinions or beliefs, they are entitled to do so. But know this, their opinion holds NO weight because we are not accountable to any of them. So we hope that our videos, posts and blogs bring joy and encourage others that they too can choose to live life with a happy heart in spite of their circumstances.
I love that for a brief moment someone like Gideon caught the attention of people around the world. Bringing awareness to rare diseases, like Peroxisomal Biogenesis Disorder is so important to families like ours. So much research and funding goes to the more common disorders, leaving families like ours without much hope in fields of science and technology.
I would love for some famous actor or wealthy benefactor to see Gideon’s video and think, “I want to support and bring awareness to PBD!” And while Gideon may not be the one to do that, hopefully some child, someday will.
Until then, we’ll keep posting his sweet face and infectious laugh. Because let’s face it, we could all use a daily dose of Gideon’s joy.
Thanks for reading, watching, following…and sharing!!