Why I Didn't Wear Purple on MPS Awareness Day
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.
Stefanie Boyce is a national speaker, spiritual director, and author of two Bible studies designed to help participants create space to be with God, and have deep conversations about what they are learning. She is best known for her perspective when it comes to finding beauty in difficult circumstances. In 2009, Stefanie and her husband got the news no parent wants to hear. Not one, but two of their children were diagnosed with a rare, genetic disorder, Sanfilippo Syndrome. Children progress until about the age of three, then slowly lose the ability to walk, talk, feed themselves, and eventually pass away. There is no treatment. No cure. Three years later, knowing the risks associated with having another child, they welcomed, their daughter,Elliotte and began a new part of the journey navigating typical and terminal, simultaneously. November 2017, Jayden (11), went home to be with the Lord and just eight months later, their daughter, Brooklyn (9), did too. Committed to thriving, not just surviving, the Boyce’s continue to navigate difficult new normals, always trusting God to reveal the beauty in the midst of such devastation. In Stefanie’s honest, real life approach that people have come to love, audiences have found encouragement, inspiration, and renewed hope. She speaks on a number of topics offering a redemptive perspective on suffering. Through creative teaching, Stefanie uses everyday items and stories to highlight God’s truth. In addition to speaking around the country, her work has been featured on The Mighty, other guest blogs, and Don’t Do This (https://www.amazon.com/Dont-Do-This-Learning-Screw-Ups/dp/1942145241) She has been a guest on Melissa Radke’s Podcast, Ordinary People, Ordinary Things, and is currently working on her first book. Stefanie enjoys connecting with people and holding space for people to grow ever closer to Jesus whether that is one on one through private spiritual direction, writing, teaching or training small groups, or keynoting an event. She is a wife, forever a mother of three, and dreams of a day she can have a little farmhouse with an old truck to call her own.
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