5.12.2011
COURAGE
cour·age/ˈkərij/Noun
1. The ability to do something that frightens one.
2. Strength in the face of pain or grief.
In the MPS world, purple is the color of courage. We wear it to raise awareness and stand together as a symbol of our children's courage. We wear it to share about the journey we our on. I am humbled by the courage of these families, and many other families.
Sunday, May 15, is National MPS awareness day. Family and friends will stand together and show support for these families...for our family and many others that live with MPS daily. We wear purple to remember all the children that have left this earth and are in Heaven. Wearing purple may be a little jesture of support, but it sends a loud message when a group of people stand together.
Isn't that true for us all? We all need a reminder to take courage. Acts 27:25 (New Living Translation)says "So take courage! For I believe God. It will be just as he said."
Resting in God's will takes courage. Facing the pain of the last 2 years at Immanuel takes courage. Loosing loved ones, facing fears, battling disease....takes courage. I am reminded that it is not my courage, but God's strength.
I wear purple.
Will you join me?
Be a part of the movement. Sunday at church, or wherever you are, and Monday at work, join us in wearing purple. If your work community is open, we have had people reach out to their co-workers as asked them to wear purple on Monday at work. If you do, please send me a picture! I would love to see a flood of people Sunday at church blazing courage! If you are around at 10:30, we are going to take a group photo to show all the MPS families our support.
Sunday evening we leave for a 4 day intensive study at the University of Minnesota. Both children will be going through a long battery of testing to join with other Sanfilippo families in collecting baseline information on our children. We hope it will help researchers learn more about Sanfilippo and be one step closer to treatment for Jayden and Brooklyn. That is courage...
Stefanie is a writer and speaker, best known for her voice on her blog, Boyce Lane, which chronicles the beauty and pain of Sanfilippo Syndrome, a rare genetic disorder effecting her older two children. Learn more at www.StefanieBoyce.com