As many of you may have guessed, I am on the countdown of my life. There are many times I’ve counted down. Days until I left for bootcamp, days until I got married, and then divorced. Days counted down as I waited for each of my children and grandchildren to arrive, and I got to watch my oldest step-daughter walk down the aisle. And most recently, just getting to the NNZ trial. Now, I’m waiting and counting down for FDA approval and Katelin gets NNZ again. So, this week I get to tick off the first month. It feels like the poet Yeats wrote about Innisfree, “where peace comes dropping slow”, slowly, slowly Peace is coming into my heart as Hope fills it drop by drop. And, one of those drops is to hear of new girls entering the study as the researchers get closer to “the number”, the number of girls that need to participate so the data can go to the FDA. I’m so grateful to all the parents who have been so brave to enter their girls into the study and so proud of each girl, because I know what they have to endure to make it count.
And I’m also counting down “Thank You” cards. I am amazed as I write these addresses, some in the States, but not all-there’s Australia, New Zealand and France even, and I haven’t gotten to all of them so there may be more. It just goes to show you how global the Rett Syndrome community is and how many people, all over the world, are there with an open hand and heart giving out Hope. I hope I don’t miss anyone, but if I do…..