To the Person Behind This Facebook Status About Children Like My Son
So like lots of moms (especially moms with children with special needs), my downtime is spent on the Internet. Pretty much everything I look at on the Internet is about spinal muscular atrophy (SMA). I have a huge network of SMA friends all over the world on Facebook. My whole newsfeed is updates on their children, pleas for prayers, well wishes and love, sharing information on trials and drugs, new equipment and sharing petitions or Go Fund Me pages — basically everything I need to know about SMA.
So last night I was relaxing with “Sons of Anarchy” on TV while scrolling through Facebook. I “liked” and commented as usual. Then this popped up, and my heart sank a bit.
I didn’t know why at the time, but it seriously pissed me off. The more I thought about it, the more angry I became. I know these things are shared with good intentions, but come on. Would you share a post saying you think adults with disabilities are just like everyone else? Or children with glasses? Or how about people with cancer? I’m guessing no.
There is also nothing broken about my child, nothing! I believe comparing a child with a disability to a butterfly with a broken wing is completely stupid.
Another reason this status upset me is also the one that broke my heart: my boy will grow up in a world where people feel the need to share on the Internet that they think he’s like other people. But my child isn’t like everyone else. Every child is individual; none are alike. I don’t want my son, Rexy, to be like everyone else. I want him to be him, his own personality. I want him to be proud of his differences, to embrace them! Yeah, things are hard for him, but they are for everyone. We’ve all got a struggle.
To the person who shared this Facebook status: I completely understand the thinking behind why you shared the status. I get that you think you’re doing a good thing. But I suspect you might not know any children with disabilities in real life. Maybe before I had a child with a disability, I would’ve even made a statement like that.
But if you ever want to actually know about a child with a disability (well, my child with a disability), come hang out with us or just ask me. You’ll find out how completely awesome he is. You’ll find out he’s completely unique, he isn’t broken and he definitely doesn’t need any pity.
Follow this journey on Team Rexy.
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