“Life is so generous a giver, but we, judging its gifts by their covering, cast them away as ugly or heavy or hard. Remove the covering and you will find beneath it a living splendor, woven of love, by wisdom, with power. Welcome it, grasp it, and you touch the angel’s hand that brings it to you. Everything we call a trial, a sorrow or a duty, believe me, that angel’s hand is there; the gift is there, and the wonder of an overshadowing presence.” – Fra Giovanni
I went to my fist social PWS function about a week ago…what a wonderful, quirky, and close community I have joined! Derrick and I both hesitated to really be a part of it at first, and now I find myself running towards it with open arms. It’s incredible how positive everyone is…how loving and open and vulnerable. And how powerful! This is a crew ready to fight the fight and find a cure, and a crew ready to carry each other through thick and thin in the meantime. It is beautiful!
In particular, I met another mama who lives in my same neighborhood with a precious little who was diagnosed last year. She is on fire for the cause and started the brilliant idea of planning a Thanksgiving tradition that focuses not on food but on community and fitness and gratitude. Plans are underway now to (hopefully) host a 5k race on Thanksgiving to raise awareness for the fight against childhood obesity and PWS, the leading cause of morbid childhood obesity today. I am blown away by the synchronicity of our meeting and already certain she is a lifelong friend, and I am so excited to help build this with her from the ground up! It has turned up the motivation even more to spread the word. My mind is reeling from all the things I have to do…call to reserve timers and tables and portapotties…write Ellen, write Oprah, learn to run a 5k. I find myself waking up in the middle of the night and not being able to stop thinking about it all. It is so empowering and so exciting!
I wish I could go back in time and tell the terrified me about this…about the group of parents and supporters, about the baby smiles and giggles, about the hope and the momentum, and the purpose that was waiting just around the corner. It sounds crazy, but I feel so blessed to be on this journey. I really do. It has taught me so much and given me a true belief in Giovanni’s words…remove the covering of what is hard and you will find beneath it a living splendor, woven by love, by wisdom, with power. And it has brought me closer to a version of myself that I want to be…one that is honest and broken and grateful all at once. Hopefully one that is kinder too. And who knows, maybe it will even bring me to be a runner…but I doubt it :).