"A Year Ago..."
Our family tries to live in the here and now. Living with HD means that we rarely look back. Looking back means we take stock of what we have left and in doing so quantify our losses. In a conversation with Lacy's weekday caregiver M today, we remembered that only a year ago he could walk unaided. Only a year ago, he could bathe himself. The list goes on and on. So we rarely go there. When folks ask how Lacy is doing, I give a short answer; "Good." Most people don't really want to know that Lacy is no longer the same, that he cannot groom himself or walk without a walker. That he falls frequently and with increasingly serious injury. That he is so paranoid we have difficulty getting him to doctors' appointments.
Yet he is good. He is mostly happy, always singing his worship songs. He usually calls us "Sweet Beloved Mom," and "Sweet Beloved Dad." We get wonderful hugs from him. Even when he is angry and threatening to send us to jail for offenses such as jaywalking or "rambunctioning" we can laugh. He has such a great vocabulary and that makes for some truly amusing word blends.
As I talked with M, I realized how little I look back. What good would it do to linger with the losses? We can't change what is going on. We can't control the progression of HD. Today we can comfort, love, and cherish. Not "a year ago..."(a time lost to us forever) but "here and now."