Rewrite the Script

We all enter adulthood with a script. It varies, depending on our backgrounds, but it’s essentially the same. And we have an idea in our heads of what that is supposed to look like. So when you go off script, because of an illness or an untimely death or an unexpected diagnosis, the first thing you say is: “that’s not supposed to happen.” Because it’s not part of the script. And, it’s easy to get stuck there. Many, many people get stuck there.
And that script is not all bad. THAT script was the motivation behind starting @smsrf . We want to give our kids the best chance they have to fit into the world and to reach their potential. It’s our motivation for all this amazing work the SMSRF is doing and it’s the reason why we are about to embark on an incredible project that we are ecstatic to share tomorrow on the webinar. So, that narrative has been useful and important.

But, what I am learning is, that narrative is not enough. It focuses on the negative which has a tendency to overshadow the beauty that’s right in front of me. When I look beyond the day to day challenges, I see that Sienna is just like us. She wants the same things we all want – love, friendship, relationships, independence, to learn and try new things. And there is magic there, right? Sienna connects with people in a way I’ve never seen before. She draws people in. She’s a gift to the world, as is every other person living with a disability.

So, I’ve had to unlearn that first narrative a bit. I’ve started to rewrite a NEW script. Because Sienna has just as much of a right to be in this world, just as she is, as the rest of us do. Now, it’s no longer only about giving her every opportunity to fit INTO the world. It has become increasingly important to me to create a world that RISES TO MEET Sienna. A world that doesn’t just tolerate her or even just include her. But, one that SEES her and HONORS her for who she is. One that celebrates her and goes to bat for her. These are individuals who have no voice. WE are their voice. My life’s work will be to help bridge the gap between the special needs community and everyone else. It’s time to raise the volume of their voices. ? #seemyspecialness




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