Painfully Aware of MPS day

A version of this post was published on TheMighty.com

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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 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 that passed away and their families that paved the way for ours.

It’s really a beautiful and important day.

So why am I so resistant to participating?

I think another MPS mamma said it best, “I don’t need an awareness day. I am aware of MPS everyday.” I don’t need a purple shirt to remind me, my son waking up in pain at 5AM reminds me. I don’t need Facebook to turn purple to remind me I am not alone, I have women I cry and scream with that keep me company. And I don’t need an awareness day to remind me the fate of MPS, I have Facebook to remind me of all the children that “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. 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.

Isn’t that terrible? What a bad attitude.

And, not true. But 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, boycotting my shirt like a baby. Instead, I wore the Running for Scott shirt to support someone else. I’ll come around I am sure, because in the end it’s not about me. And in the meantime, I am thankful for all the people that wear purple when I am too tired and sad to wear it myself.

9 thoughts on “Painfully Aware of MPS day

  1. I didn’t do anything for awareness day either. In years past I have dressed in purple, released purple balloons, and I have raised money for the cause. This year a family that was dear to my heart lost her child to mps. My daughter got a feeding tube this past year. If it had not been for another MPS parent I would have buried her. And quite honestly I have come to believe very few people outside the MPS community care about our children.

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    1. Tom-
      Thank you for taking the time to comment. Some years are harder than others, aren’t they? So sorry to hear about the other family you mentioned. The MPS community is small, but mighty and we feel every loss like it’s our own. I will be praying you feel the love from your community in the days to come. I honestly think a lot of people just don’t know how to enter in. And, they aren’t living it everyday. I bet they feel helpless, just like us in many cases.

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  2. A fellow MPS mothers words to me weeks after learning of my sons’ diagnosis of MPS were, “it’s ok to feel. The good, the bad, the sad – feel it all.” Her son had already passed away. I am one of the ones who wore purple and posted a picture of my son. However, I can understand and relate to what you wrote as well. It’s ok to feel – whatever that may be for each of us. Thank you for sharing!

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    1. Exactly! The past seven years I did too! We own a closet full of purple, have raised thousands of dollars, and volunteered our children for over 4 years of research. This year, we are tired. I am so glad we are allowed to feel whatever we need to feel and there is space to feel it all!

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  3. Couldn’t have said it better myself. As I stop to fix the feeding tube my daughter just pulled out, dumping formula everywhere, I don’t need/want a reason to make people look at me or feel bad. I’m so over it. It really does evelope every waking moment of your life. It doesn’t need a day, already has my lifetime.

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  4. Stephanie, you have accomplished so much good as a Mom & a wife. Be proud of yourself even thru your tears & your weariness. I have heard of all the very hard work you do for your entire family & the support you give other Moms. May God take away some of your sadness & replace it with His mighty love & strength. Just know you are amazing & stay connected with the people who
    encourage you & remind you everyday how much you are loved.

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  5. Thank you thank you for this. That’s pretty much exactly how I was feeling this year. Just…tired. Just wanting to enjoy Anni without highlighting the MPS. I felt even too tired to try to articulate these feelings, so thanks for doing it for me so succinctly.

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