Today, May 15th, is MPS Awareness Day.
Ever since Cooper was diagnosed with MPS IVA , this is a day I’d advertise on social media, at school, at the hospital. I’d ask friends and family to wear purple and post photos of all the purple. We did “Planks for MPS”, an ice bucket challenge, I jumped in a pool while wearing a dress. We’ve made boats and paper airplanes. Mom has made cookies for Cooper to share at school. Teachers have gone out of their way to recognize the day and wrap Cooper in support.
The day is a repeating appointment in my calendar. It’s there every year. I knew it was coming. Did I do anything? Plan anything? No. I’m wearing a purple shirt only because it’s one of my favorite workout shirts.
I don’t know if I’m hiding or fighting back. I don’t want Cooper and I to be defined by MPS anymore. It defines us enough. It has a grip on us – weekly infusions, yearly surgeries, what seems like a million extra appointments. Constant heartache as we navigate our son’s life with never ending challenges.
Every fifth grader at Cooper’s school gets to do a Ted Talk. the first line of Coopers talk is “ It’s hard being a 3 foot tall 5th grader” watch the rest of it here:
So it appears this is my MPS Awareness Day campaign. MPS sucks. Lift those affected by MPS and all rare diseases with your support. Your humor, shoulders to cry on, special moments of joy. Donate to research and support causes (Rooting for Robert or MPS Society) if you want and can. Pray for grace, peace and patience for the families.
I’m not donning the purple this year. I need to change out of this purple workout shirt and get to Cooper’s school. He has rehearsal for the talent show in 35 minutes, and I’m going to put my energy into that (and moving his 8 piece drum set upstairs, to the car and into school).