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Why I Didn't Wear Purple on MPS Awareness Day

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Stefanie and her family.
Stefanie and her family.

I can always tell when it’s MPS Awareness Day because my Facebook feed goes purple. Purple balloons, purple hair extensions, purple shirts, purple profile pictures, purple lemonade stands. It’s a day the MPS (Sanfilippo syndrome) community pauses from our individual struggles and stands in solidarity to announce, remind and remember. Announce there is a terrible thing called MPS and we need a cure for it. Remind one another that we are part of something bigger than ourselves, and we are not alone. And remember all the kids who have passed away and their families that paved the way for ours. It’s a beautiful and important day.

So why am I so resistant to participating?

I think another MPS mama said it best, “I don’t need an awareness day. I am aware of MPS every day.” I don’t need a purple shirt to remind me; my son waking up in pain at 5 a.m. reminds me. I don’t need Facebook to turn purple to remind me I am not alone; I have women I cry with, who keep me company as we support each other. And I don’t need an awareness day to remind me of the toll MPS takes; I have Facebook to remind me of all the children who “gain their wings.” Their announcements, like an emotional ambush, sit in between a political rant and birth announcement in my news feed.

I felt the same way about Rare Disease Day. After seven years, I am done yelling. I am done trying to convince people to look my way as I stand covered in purple. I am tired of convincing people to give to the bottomless pit of “research.” I would rather hide, if I am being completely honest. I don’t want to change my profile picture. I don’t want to beg my friends to wear jeans or purple and then get sad because they forgot or because they don’t own anything purple. Oh, to not own anything purple. I don’t want to identify. I want to cry and pull the covers over my head and make it go away.

Maybe my heart is just sad right now. There is no amount of purple awareness that will change what is happening to my kids. And after seven years of fighting, seven years of research, seven years of slapping on a smile covered in purple, nothing has changed.

It’s not true, but right now, that’s how I feel. And sometimes we let feelings trump truth, don’t we?

And so I ran, purple-less, on MPS Awareness Day. Instead, I wore the Running for Scott shirt to support someone else. I’ll come around, I’m sure, because in the end it’s not about me. In the meantime, I am thankful for all the people who wear purple when I am too tired and sad to wear it myself.

Follow this journey on Stefanie’s blog.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 17, 2016
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