Mom Read Free Page B

else, and it’s a very short life expectancy. I presented at birth with all of the characteristics, which is extremely unusual. But I don’t fit all the categories—I’m tall and I don’t have heart problems—and so when I was eleven, they changed the diagnosis to an unknown progeroid syndrome. I love proving doctors wrong. It’s been a wild ride, but fun. I don’t ever remember being sad or fearful.
    Jody: You always woke up from your naps happy, and you always woke up in the morning happy. I would find myself just hoping that you’d wake up, because I knew that you were going to be happy and that we were going to have a good time.
    When you were about three years old, your older sister and her friends were outside skating, and you wanted a pair of skates more than anything in the world. So we went over to Toys “R” Us, and we got you a pair of clip-on, hot pink roller skates, and we went home and put them on you. You started for the door, and I said, “No, you have to skate in the house. I don’t want you to get hurt.” So you learned to roller skate on deep shag carpet.You looked like a little roller-derby queen—you know, moving those arms and moving those legs, and you were content with that for a little while. And then one day you walked up to me and you put your hands on your hips, and you said, “You cannot keep me in this house forever!” That just opened up my eyes: I knew that you needed to go out there and skin your knees. So I said, “Well, that’s fine. You just go out there and skate, but don’t come in the house bleeding.”
    It was a defining moment for me when I realized that I had to let you experience life. Can you remember any of those defining moments in your life?
    Barbara: Probably the most important was whenever I finally lost my vision. I miss the little things that people take for granted: just being able to glance and know what something is, like a Coke can or a gum wrapper, without having to feel for it. I’m extremely lucky that I was sighted for a long time, so I know what things look like. But I do miss rainbows and the reflections of clouds in the water and not being able to see the bobber when you go fishing.
    Jody: I love it when you go shopping with me and I try on clothes, and you tell me that it looks really great. I know that you really can’t see it, but it always makes me feel so good about myself. We talked the other day about how you remember your reflection in the mirror, and that you will always be young in your mind. I was so excited to hear that, because now I’ll be forever young in your eyes, too!
    Can you think of some of your happiest times?
    Barbara: Yes, and it has to do with you. Out of all of my surgeries, you have always been there when I woke up.You’re the first person I’ve seen, and I knew no matter what, when I went to sleep I never had to worry because you were always going to be there holding my hand and talking to me when I woke up.
    I’m very lucky to have you.You’re just the best mom in the world, and I could never repay you for that. You’ve always taught me that we can get through it—it may not be okay, but it gets better. And that’s one thing I think is definitely true: things may not be okay, but at least they’ll be better.
    Jody: I’ve always felt that when you inhale, I exhale. The closeness that we’ve had through all of this has been one of the most rewarding things in my life.
    You call me so many times, and you’ll say, “Just remember to breathe.” That means so much, because I know that you know that it’s been a hard day.
    Barbara: And you know when I’m having a hard day, and it’s just, Breathe.Take it minute by minute .You may not be happy that minute but—Okay, let’s have a five-minute pity party, get it over with, and then let’s move on . Because it’s not going to do any good to keep dragging it out.
    It’s easier to go through life being happy than sad. If you’re sad, everything is humdrum