A few years ago, I was attending the third funeral in a row of a family that had been forever changed by the ravages of Huntington’s disease. My friend and neighbor, Lael, had lost her husband and two children within a very short time. As her son spoke at the funeral, he paid tribute to his mother and said, “My mother is who she is because of this disease.” Lael is a wonderful woman; perhaps one of her greatest characteristics is her sense of humor. I have never suffered the pain of this dear lady, but sometimes I hear those words in the back of my mind when I think of my son Andy. “I am who I am because of Andy.” And, isn’t it ironic that at a time I am wondering, “What’s in a name?” that even my name carries an inside joke between God and me—about the need for a sense of humor in this life and also it offers a clue about who I am. Never does the last week of January pass without a few moments of reflection on that day when Andy came into my life bringing with him the gifts of Peace, Love and a lot of Rock and Roll!
Few people go through life spending as much time together as Andy and me— we have certainly spent more time together than I have with my parents, siblings or spouse. We do a tricky dance, the two of us. He “doesn’t need parents”—just ask him; but he still needs a “driver!” At 28, Andy is very much an adult—not a kid in an adult body, but an adult, with adult needs, adult wants and adult frustrations from living in a world where things don’t always go according to plan. In other words, your “driver” doesn’t always get you to your desired destination! Oh Andy, how I can relate! Somehow, though, we just crank up the radio, keep moving and rock on!
No longer do I look back at what Andy has taught me—but now I look at how Andy has changed me. I am a much different person than when we met so many years ago. He has made me slower—perhaps that is not the politically correct way to phrase that-but life in the slow lane means that you take your time going everywhere and doing everything. We take our time getting dressed; we amble through the grocery store, we don’t hurry when we eat and together we get to enjoy the journey. (I practice A LOT of patience at Sam’s Club-because that is a BIG store to walk slowly through.) Andy and his friends have blurred my vision. I no longer can see those socially constructed lines between normal and not-normal, able and disabled. Everything is fuzzy and I now realize that everyone I meet in life has “special needs.” Even though I am still a “work in progress,” Andy has made me more honest with myself. Living with someone who is 100% authentic at all times, makes you envy the genuine life. It makes you appreciate being able to say, “No, I don’t like that” or “No, that doesn’t work for me” (his favorite phrase of late)—without having to tag on an excuse! But when Andy does smile and laugh—it is from the heart, pure, guileless, no strings attached. Finally, Andy has taught me to love, unconditionally—as best I can anyway. Andy has poor vision too. He has no concept of class, color, intellectual ability, occupation, religious beliefs, age—he doesn’t even pay attention to the difference between mean people and nice people. Everyone just is in Andy’s world.
When I think back on that cold, January morning, twenty-eight years ago, I remember Steve laying Andy in my arms and telling me what the Dr. had just told him—I remember saying, “It will be o.k. We will just take him home and love him.” Maybe what was really going on in that moment was Andy was laying there in my arms looking up at me and thinking, “Well, she has potential, I will go home with her and see what I can do. Her eyes are a little different than mine, but they look kind. I will just love her the best I can and hopefully someday in the future she will be whole again. Meanwhile, I will be patient and remember that she does have “Down” syndrome—and that is o.k.!”