Chapter 10: Reflections on Life, Advocacy

14:09:21:26 - 14:13:20:16

Lisa: So Nancy, I wanted to shift gears a little bit and just ask you about some of your reflections on your life and your career.

Nancy: Okay.

Lisa: The first question I have is about Robin, and I wonder if you can articulate what she means to you.

Nancy: She's very precious to me. I can't tell you how much I love her. I love to kiss the back of her neck. You know, like you do to a baby? The back of their neck is so delicious. I do that to her, when she's going to bed, and she lays down, you know. We have our little routine before I say goodnight to her. It's our goodnight thing, you know, and in between each word I have to give her a kiss. And she hooks her arm around my neck, you know, down to her, and I do this to her ear, and it is done every single night.

Joanne and I had something similar, but not the same language, and she does something similar to Arielle, you know, a special goodnight thing.

And when she gets up in the morning, it's a kiss, and I kiss her just whenever I can. I always give her a kiss when she leaves. She cannot walk out the door unless I give her a kiss, and she gives me her chin. So... you know.

14:10:47:13

Lisa: You talked about the language you use when you have your bedtime ritual. Can you tell us what you say to her?

Nancy: Let's see now. I'll say to her, "Are you going to say goodnight to your mommy"? Give her a kiss. Are you going to say 'sweet dreams'? And give her a kiss. Are you going to say, 'see you tomorrow morning'? Give her a kiss. Then I say to her, are you going to say, "I", and then a kiss, "love", and a kiss, and "you", and a kiss. Then, the hand that is free, I hit it like this, Robbie is a mommy's girl, Robin is a mommy's girl, Robin is a mommy's girl, Robin is a mommy's girl. And I'm patting her hand to that rhythm, and that's our final kiss. Then I turn out the light. Then I have to turn it back on again. Yeah, she has to fall asleep with the light on. But this is the routine. It's been going on now for 55 years.

No, but she's very precious to me. I can get annoyed with her, don't misunderstand me, when she's extremely demanding. The aide is there, and I'm here, but she only comes to me. And if the aide gets up, she will take the entourage, you know, but I have to come along too. So and it sometimes gets to be a bit much for me. I can't always do it, because I get short of breath. Just from walking maybe -- I have a twin rancher, so everything's on one floor, and sometimes just going from the living room to her room, and doing whatever has to be done, she wants the sheet changed or something like that, by the time I'm finished, I'm short of breath. So -- or I'm tired, or I know it's the fifth week so I'm due to have the infusions, and everybody knows when I'm due. It's really flagging at that time. So I can get a little short with her, and say no, you have to sit down.

Or she loves Lawrence Welk, and she wants it on -- when she comes home she wants it -- on Sundays she's got to wait until 8:00. I have to watch my news programs. I'm a news junkie, and she has to wait, and sometimes she doesn't like it, you know. But she's the reason I get up in the morning.

14:13:20:16 - 14:15:04:24

Lisa: What has Robin taught you about life?

Nancy: About life? It's very precious, and make the most of every day, and you find delight in the simplest things. You know, when children are little and they see their first bird, or they see their first flower coming in the spring?

You know, I have a small park across the street from my house, and they see the clouds, or -- and they point out -- so you see things again, all over again, from little children. And also with Robbie, when I find out she's -- when she wanted to get somebody's attention, she would sometimes give them a slap on the shoulder, because she couldn't say anything, she doesn't speak. She makes only noises, sounds. Though she does say "mom-mom," or we say that she's speaking French. She goes, "oui, oui, oui", or you know, so we say, "Well she's speaking French now". I've never been able to discern any of her sounds to a particular word; I have not figured out the dictionary yet with her. But she does know 'mom-mom'. And it's your values, your expectations, and to enjoy the world around you. Fortunately my younger daughter is that way. We can look at a sunset, or sometimes after a very heavy rain there's always a rainbow.

14:15:09:10 - 14:16:52:19

Lisa: You were talking about your daughter, Joanne.

Nancy: Yeah, when she had gone down -- she had met Richard in Miami, Florida, and they moved to Georgia and she went back to finish up her degree. I went down for her graduation. We had gone down to Savannah for the day, and it had rained, and coming back it was the Lumbar Poplars, you know, its like a cathedral drawing, and it was just so beautiful, and we both just looked at each other and said, it's so gorgeous.

But at home, after we have a heavy rain, there's always a rainbow here, always have one or two rainbows, sometimes a double one, and the world looks like it's been freshly washed, you know, where the blues are really blue and the green is so green, it looks almost like a painted backdrop. And this is what I enjoy. I'll say, come look outside. So life becomes much more simpler, as to what you enjoy. The material things are not that important, although my paintings are, the ones that I have at home. They are all memories of some of our trips that we brought back, my husband and I. So when I repaint the house, everything goes back to where it was.

But -- and she has brought me so much pleasure, even with all the difficult years, and now as I started to say, when she wanted your attention she used to slap you on the shoulder to get your attention. Now she goes like this, she just gives me a little tap on the shoulder.

14:16:52:19 - 14:17:51:18

Lisa: Nancy, how would you describe yourself? How would you describe yourself?

Nancy: I don't know. I don't know how to describe myself. I'm a mom, grandmother, love my family, devoted to my nieces and nephews, and who always think of me. We're always -- one thing is that when it's a family dinner, family celebration -- I'm not talking about weddings and things like that. I don't expect Robbie to come, she would be out of her element.

But when it comes to holiday dinners, Robbie is always included. Otherwise I won't go. She has to be included, and she looks forward to it. She is so happy when we get there. And they make a fuss over her, which is -- and she's happy as can be. She's a happy kid. So she's happy, I'm happy.

14:17:51:18 - 14:20:06:11

Lisa: What do you feel your biggest accomplishment has been in life?

Nancy: My biggest accomplishment is seeing the changes that have occurred in the system, that people like her are valued, and that's why I still stay in it. And when I see things happening in a good way, and there are other people like me who care the same way, I feel then there was a reason for me to be alive, to be on this earth. There's a reason for it.

And once, somebody said to me years ago, there was a reason why God gave you Robin. Of course at that time I couldn't see it, because I didn't worry about myself, I worried about her future. What would she have been like if she had been born normal? I think she would have been something special. But she is special, you know, but I worry about her being isolated, you know, and she's not. So she has one-on-one and she's included when -- it was last week when she had her second injection in her knees. So I brought her -- we got to program around 10am, and they said, oh Robin's here, and everybody applauded, you know, and she was happy as a lark. So she's part of the group, and that's important to me. So that's it. I'm happy.

Can't do the traveling I used to do, which I used to love, but I'm living it, so I accept it. I get up to Penn State once a year for their arts and craft show in July. I was there last year. Went to Penn State and everything for the weekend, with my sister and brother-in-law, and my Joanne, and my Arielle. So that's it.

Lisa: One last question for you: how would you like to be remembered?

Nancy: For being Robin's mother, for being and having the joy of Joanne and Arielle, and for trying to make my surroundings a better place, my environment a better place, my world a better place. That's it. Can't ask for anything more than that.

Lisa: Thank you.