It’s been said that we are living in the times that history books will label “The Offended Years”. Everyone is offended by something, everyone is either for being politically correct or so tired of being politically correct that they err on the side of being rude.
I don’t agree. I think that these are the years that we are finally BOLD enough to have uncomfortable conversations, and not afraid to share what is hurting ourselves and others…. and asking for answers. That’s healthy. You can’t control how people feel, only your reaction to it. So no, I don’t believe in being politically correct, but I DO believe in being thoughtful, kind and objective. Not everyone will see things the way I see them and there is a special kind of beauty in being able to step outside of yourself and empathize with others.
I prefaced with this, because I want you to understand that what I’m about to say has nothing to do with being offended, or anyone being right or wrong. I just want us to all be a little more thoughtful in this one specific space.
That space is…. Tagging parents of children with special needs in the latest “feel good” piece that reminds you of them or their child.
I know! I KNOW what you’re thinking. It all comes from a good place. Those videos and news articles just make your heart soar and you need to share that with your friend and we appreciate it. We do. Every time I’m tagged in a post about a sweet girl or boy that happens to have Down Syndrome, I seriously think “I love that they’re thinking about us.” It makes my heart happy to know that I have friends that care so much about our little family and especially about RC. I wouldn’t trade that for ANYTHING. I hope you know that.
Rarely, do I actually read the articles or watch the video. Some days, I might. But most days, I can’t. The proud, heart-smile that you get from watching that video? Even 3 years later, there are still days that I struggle with being in Holland. There are still many days laced with fear of the unknown. It may be because RC is younger, and that this will change as he gets older. I don’t know… this is my first time doing this. So instead, I save them and say, I’ll watch them another day. Another day still hasn’t arrived.
When you watch the video and see all the abilities, accomplishments and how cool it is that someone asked the most precious kid to prom- that’s not all that I see. I do see the abilities, accomplishments and am SO proud of how inclusion is becoming mainstream. But, I also see the things my child is not doing yet… my chest tightens as I wonder if those same accomplishments will be RC’s. I watch with hope that one day he will be attending his prom, but not as a sort of charity case that needs to be filmed and made viral to make everyone feel like the person that is going with him is an incredible human being SIMPLY for accepting his invitation.
There are always tears.
Hot stinging tears, and most times lots of smiles.
And most time lots of fears and heartache accompanying the tears and smiles.
Yes. I am describing what essentially is a HOT MESS and that’s why I don’t look at them.
Every day I wake up and give my first lucid moments to God. Three years later, one part of that prayer remains the same. I want to have as many “Down Syndrome Free” moments as possible. I know it’s silly. I talk about Down Syndrome a lot, and share those same videos from time to time. I’m in groups specific to the Down Syndrome community and I interact in them.
But the difference is, I get to tiptoe into those moments when I choose.
It just feels different when I choose to visit the gals in my DSDN Rockin’ Moms, CADS and DSAMT groups. It’s different from when I’m blowing bubbles with RC, he runs to catch them and I hear a soft ding, so I check my phone to see I’ve been tagged 5 times for the latest CUTEST video of a child with Down Syndrome. I’m pulled from that “Down Syndrome Free” moment, and thrust into “Don’t Forget Your Child Has Down Syndrome” tailspin. I know, I should probably stay off social media so much. But, when you have a husband on the other side of the world and run a business that relies on social media for connections, that’s not an option.
I might sound particularly whiny to some and harsh to others. Who am I to ask for Down Syndrome Free moments, that’s what our life is! True. I love everything (well, let’s be honest…most things; he’s still 3 and you know how particularly trying that age can be) about who my son is. If God came to me in and told me that I could have RC without Down Syndrome, I would give a resounding NO. It is who he is, he is what I love and his diagnosis has taught us extraordinary lessons already.
Believe me, I absolutely know that this isn’t a “normal” reaction. It’s possible that this reaction is just mine…but I’d be willing to bet that it’s not, especially for Mama’s still adjusting.
Please don’t take this as a jab and say “I’m never going to tag her in anything else, ever again”. Remember the title? There’s just one thing I want you to do before tagging. Look at their last few posts on their timeline. Have they shared any posts about their child’s disability that day? If not… save the post for when you know they’re in that frame of mind. Or, send it to them in a message with “For when you need to see all the amazing things your little one is going to accomplish.”
We’ll know to look at it when our heart is ready.
We’ll appreciate you allowing us to have as many “Special Needs Free” moments as possible.