I am writing this at Newark Airport sitting on the none too clean ground next to an outlet trying to catch some free wifi. The plane I was scheduled to leave on at 3:00 pm was cancelled and everything else to Toronto has been grounded. So here I am bone tired, on a dirty carpet, sipping a cup of cold tea and typing a post. Not a very auspicious launch of the new F.E.A.S.T. Blog. I would much rather be home in my familiar and comfortable bed but perhaps this is more fitting as there is really nothing familiar, comfortable or easy about eating disorders.
I am on my way home from ICED (more on that later in week). Our Laura Collins was given this year's AED Advocacy award. It is hard to convey just how moving this was in real time (suffice to say there were a lot of tear stained faces and mad standing and clapping at the end). Like many, many other parents I credit F.E.A.S.T. with saving my daughter's life. I was lucky to find ATDT early and through the forum I learnt what I needed to do to get us through. Perhaps more important though is what I learnt from Laura about how to be to get us through. This illness brings us to our knees and it is easy to forget that we can and should have expectations. Laura reminds us to hold on to a humble and healthy sense of entitlement and to stay the course in seeking better information, better treatment, and better care for our children. The magnitude of this can not be underestimated.
Laura Collins raised her voice: She built relationships; she asked questions; she sought to understand and she demanded engagement. She raised her voice when it was difficult to do so. She raised her voice when it would have been comfortable, familiar and easy not to. She tolerated her own distress and we have to tolerate ours. As Laura forges new paths ahead, so must we. We have to take our love and admiration and need for Laura Collins and channel it. We have to do some crazy alchemy and turn our gratitude into slivers of 'fierce advocacy' that we can embody and use.
We don't need to do it all and we don't all need to do it big...we just need to do it. So, my hope is this Blog will be one sliver and provide a space for us to engage and share...and to raise our voices.