MANIFESTO

We acknowledge your tough road. We don't say we're sorry, but rather we say we are with you, we are brave, we are together. When it was the toughest of times for my family, a friend of the family e-mailed me with a subject line with only three words and no message. The three words said “walking with you”. That meant everything. We walk through this journey of difficult medical questions and very few answers, but we walk together. Sometimes you can only put one foot in front of the other to make it through the day. Sometimes you can only handle the next minute, the next five minutes, the next hour, but somehow we make it through the day. Each and every day is a struggle and yet every day can be filled with hope. We have to remain optimistic about future technologies that will be invented and future medical interventions that are yet to come. We live in America and we are blessed with the gift of modern medicine. But we acknowledge the struggle. We acknowledge the stress. We acknowledge the difficult pressure an illness puts on a family, between spouses, and with friends. We have to stick together. And each and every day we try our best. And at the end of the day, or long night, you have to just tell yourself, you are enough and you have done enough. Your child is blessed to have you in his or her life, and you have to remember that. We as caregivers are brave, our children are brave, and our medical teams are brave = Lotsa Brave People.