Fill up with grace March 11
Dear Friends of Grace,
Grace is doing her best to fight this great fight. She’s extremely wobbly on her feet, one of her ankles is caving in, her hands, arms, head are all tremoring and she looks a bit “Katherine Hepburn” these days. She’s tired. Her life is hard every minute.
Although her body lacks the ability to regulate things that we all do automatically without thought or effort like swallow, breath, sleep, walk, talk, etc., she does do one thing with perfection and independently and that is LOVE. She loves indiscriminately and without limits. To me, that is something we all fail at. Grace loves you no matter what size, smell, color, or disability you have (inside or out). She has mastered or actually was born with this ability that very few people in this world ever achieve.
Despite all the struggles of Grace, I had an amazing day today. I went to the Community College of RI in Warwick. As I was walking up the cold, shadowy entrance, I saw a beautiful set of eyes looking at me. It was Grace. Her photos were on display. There was a table with posters, handouts, Youtube slideshow playing on a laptop, and a passionate young lady there named Amanda with Steve (a wonderful Friend of Grace) rallying support for the Race for Grace and telling anyone who would stop at her display all about Grace and Rett Syndrome. I was blown away. I met one of Amanda’s professors who was on fire with energy for Grace and she told me she showed all her students the Youtube video in all her classes to raise awareness about Rett, Grace and the suffering in the world around them. She’s opening their eyes and teaching them so much more than French.
I met a young man, Jean, from Rwanda. He stopped to meet me. He had a light in his eyes as he listened to me talk about Grace and how she’s like an oyster, under attack, but she found the strength to fight back and form a pearl amidst the devastating assault on her body. I could tell he understood. We shook hands and he walked off with a smile. His teacher told me his story. He was 13 when without warning, his village was in the midst of the breakout of the Tutsi Genocide and his his parents were each from a different “side” and he lost his entire family in the devastating tragedy. He ended up leaving his village and dead family members, walking alone a distance from approximately RI to NY and somehow, miraculously, found safety. His journey was long, devastating, exhausting yet he endured. He has been forming a pearl ever since. He is not so unlike Grace…rising from the ashes of devastation and making something beautiful. I know I will see Jean again someday.
Most people in this world suffer from the yesterdays and the tomorrows. Many forms of mental illness would cease existing if those two crippling fears disappeared and people stopped looking into the past and fearing about the future. Grace and the incredible young man from Rwanda I met today live in the moments of today. They love with all their heart. They serve those around them. They teach lessons that no one else can teach. We need them. We need their experiences and their strength and their pain. We need to look at them and wonder, “Could I do that?” Every single human being on the planet will be attacked like an oyster someday. Some people will undergo several attacks. It’s up to us to whether we surrender, become crippled with fear, become angry, fight to survive or simply accept what we cannot change and decide to make a pearl. The attacks are a necessary part of life. Without them, we would be shallow, empty vessels.
I’m headed for bed and hoping Grace will sleep tonight but I couldn’t go to bed without sharing my day with you. I’m spending most of my life trying to fill my tank with the lessons of Grace and the lessons of the inspiring people I meet throughout my life with Grace. Every life counts and every suffering can bring strength.
Be strong. Be thankful and fill up with grace wherever and whenever you can.
Peace,
Tara