The dictionary defines hope as “the feeling that what is wanted can be had or that events will turn out for the best.” I have hope. I have an abundance of hope. I would not have survived, even thrived through a terrible divorce. I would not be able to get up every day, get dressed and face a day that I know will include seeing my child in pain which I cannot ease, something that is more painful than losing my parents, my marriage or my own health.
I love the quote from Emily Dickinson “Hope is the thing with feathers that perches in the soul ~ and sings the tunes without the words ~ and never stops at all.” That is what hope feels like to me. It is in my soul. It is unwavering. But hope is just the beginning. Hope is that piece of my soul that compels me to act. It is the belief that a single, middle-aged mother of two children with a rare disease can change what the future will look like for them.
So, do we sit and hope that “events will turn out for the best.” We do not have that luxury. We are living rare. Unlike cancer patients, we cannot hope that a treatment that has proven effective for many cancer patients will prove effective for us. Very few of us have treatments. Our treatments are for symptoms, not our diseases.
Living rare means we are fighting on so many levels, too many levels. We are fighting for a reasonable diagnosis time. We are fighting for treatments. We are fighting to be seen and heard, but I have hope. More importantly, I believe. The dictionary defines believe as “to have confidence in the truth, the existence, or the reliability of something, although without absolute proof that one is right in doing so.” The dictionary uses believe in the following sentence “Only if one believes in something can one act purposefully.”
I have hope! Hope is residing in my soul and hope drives my belief that if I act purposefully I can change the future. Every morning I wake up and believe that I can create change for my children. I believe that change is driven by the rare disease community, that it is our passion and our willingness to act purposefully for the things we need that are going to define our future. We have hope, but we are motivated to act by our beliefs not our hopes. Hope. Believe. Do.