Chapter Two: Gina (daughter)

05:45:09:19 - 05:47:17:14 Lisa: Dee, I wonder if you can tell me a little bit about your first memory of Gina.

Dee: Gina, my first memory of Gina herself, was sitting in an incubator in a hospital for a month, with leads around her heart, because she had serious heart problems, too, and she was very cyanotic. And I would go every night and see her, but you weren't allowed to go touch her, so I had never touched her, from the minute she was born. In those days they just take the baby, and especially when they were ill like that, they'd just move them into an ICU unit, and so I would go, but I could never touch her. And I would just stand there and, you know, look at her for awhile and, you know, maybe stay about an hour, and then leave, and come back again the next night. I wanted so much to have a second baby, so I was so thrilled to have her. But she really did, she had club feet, she was cyanotic all the time, and her birthweight was extremely low, even though she was almost a full term baby. So she was totally different than my other daughter, who was eight pounds, seven ounces at birth, and Gina was four pounds and failing to thrive almost from day one. They couldn't get her to suck on anything, they couldn't get her to respond very much. She had jaundice. It was a new experience for me. All my nieces and nephews, that was the only comparison that I had was my own nieces and nephews. All of them had been born fine and healthy and well, and so having a little baby that was so seriously ill, and my older daughter, she was about four and a half, and we talked all the time about how wonderful it was going to be when she had a brother or a sister, and from the minute Gina was born, she was hospitalized and we were leaving Denise all the time to go see her, and it was hard for her, too.

05:47:19:05 - 05:50:46:02 Lisa: How did your family members, your husband, Denise, your extended family who lived so close to you, were so much a part of your life, how did they react to Gina having a disability?

Dee: My sisters -- Gina was just accepted for who she was. I think my in-laws had a harder time accepting that we had a child with a disability. They kept saying to me, nobody was ever born like this in our family, things like that. I know they didn't mean any harm, but you know, that wounds you every time somebody says something like that to you. My mom and dad lived above us. They were, again, great support for us. Vincent would, for us to have a decent life, he worked two jobs, so he was away a lot, so it was just basically Gina and Denise and myself, and when my parents were able -- they both worked, but when they were able to take a little bit of the pressure off of me, they would come and take at least Denise and do something with her. But I mean, my family were -- she just -- for the most part, in the beginning, I think we just wanted to believe she was just going to still be a little baby, that's all that mattered. But she was two years old and she still only weighed eight pounds. And my sister used to make -- had a doll -- she worked for designers. She was a seamstress, so she would take doll patterns, dress patterns, and make Gina dresses because Gina's dresses were about this big, because she only weighed eight pounds. But we tried to make her, you know, as she grew a little more, and more and more, we wanted to have nice little dresses and stuff. So my sister would make all her clothes. And Gina was sick a lot. She would take hours and hours to feed. She couldn't suck, so you were supposed to feed her every two hours and try to make her gain weight, and as soon as you got the two hours worth, it would take you two hours for her to get it down, and as soon as you did she'd upchuck it, and then you had to start again. And she was very opposed to eating, you know, and sucking, and you could tell she was exhausted from just trying to suck the food in. Her heart was pretty bad in the beginning, and certainly that, I'm sure, contributed to her not doing well. But it was hard on my other daughter, because we had to worry about Gina getting infections because of this serious heart condition, so it was always, you know, don't touch her if your hands are dirty, and leave her over here, and she was very fragile. Her soft spot didn't close until she was about two, so I mean like, she couldn't sit up until she was about two and a half. She was just flaccid, she just would roll -- just fall over, and she couldn't sit, she couldn't hold her head up. So it wasn't the baby I'm sure that we all dreamed about and wanted, but you know, she just needed love and care and support. And it's hard -- I didn't feel like I minded it, because I wanted her so bad, and I'm sure everybody else wanted her, but you know, life goes on, everybody goes back to doing their own stuff, and the first few years were very difficult, because she was pretty sick.

05:50:47:00 - 06:02:25:08 Lisa: Dee, I wonder what the doctors advised you to do. You had a child with such significant needs.

Dee: Well interestingly enough, when Gina was transferred -- she was in Pennsylvania Hospital for over a month, and she was not doing well, and they wanted to transfer her to St. Chris'. We didn't have any money. Vince was a fireman, and you only got 30 days for your whole family, and between Gina and I we had used up that 30 days even before the end of that month. And so when she was transferred, they transferred her in an ambulance and I went with her, and they were waiting for me when I got to the door at St. Chris', wanting to know how I was going to pay her way. It ended up they were able to help me to get help through The Heart Fund, because she needed a cardiac catheterization. They knew she was a mighty sick kid, and there I met my doctor, who became a lifesaver for us over our lifetime. He's still Gina's doctor which -- she's a pediatrician, but Gina still goes to him, and believe me, some days I think he's the only doctor who will tolerate her, because she doesn't like doctors very much. So we met him. He was the resident at the time, and I liked him a lot, and he was -- he actually baptized her for me because they weren't sure she'd live, and I said to my husband, if he goes anywhere, I'm going to follow him when he leaves here. In the meantime we had a little Italian doctor who took care of her, who was a pediatrician, who actually taught Dr. Barberra, his name is, and Stu Barberra, who still is in practice today, and as I said, Gina still goes to him, he has a sister with Downs Syndrome. So I think he had -- you know, had an understanding of what was going on from a parent's perspective, than many other doctors might have had, but we just fell in love with him, and obviously we're still with him. And Gina loves him too, although she gives him a hard time. So that's -- and Stu -- I worried about her, because she just couldn't gain weight. I mean, one time we had to take her out to the hospital, and when we got to St. Chris' this time, we had to take her because she had a grand mal seizure. I had never seen anybody have a grand mal seizure. She had a grand mal seizure, and Vince and I jumped in the car, and luckily my mother was there that day, and Jean Denise was so afraid because of what she saw, she was dragging along the side of the car as we're trying to get away and get to the doctor's office. Well we ended up she had to be placed in the hospital, and when I (inaudible) with some of those other doctors, they were not quite as understanding, and they kept saying to me, has your doctor really told you what's wrong with her? You realize she has a big head and a small body, and you know, I called Dr. Barberra and I said, you know, are you not being -- what's going on? Because if you're a mom, you know when a child is not progressing, and I would say to him all the time when I would go, how come she's not sitting up? How come she's so flaccid? How come you can't console her when she cries? How come she barely sleeps? How come she can't suck? And he'd always say, Dee, you know, she has a heart condition. These kids, it's hard for them to get started, and their progress is slow and their development is slow. And even though he kept telling me that in my heart, I knew it wasn't that. So when these doctors finally confronted me with this, you know, I went and I talked with him again, but he always was kind of like putting me off, you know. He never quite was upfront with me, and I think I think he was trying to spare me -- but you're not sparing a mom when you have a kid with a disability, because you know it in your heart. You just need some confirmation that where you're at and what you need to do. So when Gina didn't make any progress, and she was like two and three, I started to seek out other places. There was nowhere for us to go, they didn't have programs at that time for early childhood programs or anything like that, so I read about this thing that they did called patterning, where you take a person and you used crawling as a basic way to help them learn. In the meantime, we were trying to help Gina learn. We tried to sit her up and she would fall over, and we'd sit her up and she'd fall over, and so we'd try to help her learn to sit up by helping her learn, put one hand here, put one hand here, pull until you get up, and she did a little bit of it, but not much. And we taught her -- because she couldn't get up on her knees and crawl, she didn't seem to have the capacity to do that, we told her to roll so she could move around. And she learned to be a terrific roller. She really did, she could get into two and three and four rooms, right behind you. I mean, you would almost not realize she was under your feet, you know, and I still felt we needed something more, and I kept pesting the doctor about it. So finally my husband's family raised $1,000 for us to go to this (Dillman Delecato ?) Institute, which was up on Stanton Avenue, where they did this patterning, and we took her there. It was very intense. We had to go there for five days, for eight hours a day, and she had to go with us, and they supposedly did an assessment. Of course they said she was brain injured, and that, you know, you need to retrain the brain, and the way you do that is through crawling. And so they gave us all these instructions and things to do and equipment to build, and we built all of it. We had no dining room set. We put everything in the dining room and we -- and I went out because you had to do it five times a day, and I was very -- I didn't have a chance to meet neighbors. Not that I was -- I'm kind of a quiet person anyway, although everybody would tell you that's not true. And so I didn't really know my neighbors well, but I needed people to help me. I needed three people to do this five times a day. So I went and knocked on doors, and neighbors responded, and they said they would come. I told them it would only take them five minutes if they would come and just help me, and if they just did it once a week, and I made a whole schedule and got all these neighbors to help me. And my family members -- my aunt used to come once a week. My mother would come. By then I had moved out of my mother's apartment and we bought a house in Longdale, and it was -- it was very intense, and a lot of people discouraged me from doing it. My doctor discouraged me from doing it. In the meantime, I had noticed when she was moving around, she often would like stop and blink and blink and blink, and I said, I think she's having some kind of seizures or something, and no, no, I don't think so. But eventually, she had another grand mal seizure, and when they did testing, they found out she was probably having a petit mal seizure about every ten seconds. But we started the treatment, and I -- how to put this -- because she rolled, they were very fascinated when I took her there and they saw how she could roll all over. She was a skinny little thing, because she still continued not to thrive well; she would never touch food. They said she can't do that anymore. You'll never get her to crawl as long as she can get around rolling, and I thought, after all this time we spent teaching her how to roll, she can't roll anymore. And they said, we want you to build this T-bar and put it on her back, and keep her from rolling, but put a lot of toys out in front of her. Just to go back a minute, Gina also had serious club feet and it took a very long time, about nine months, of casting and then off -- you get shoes on a bar. I don't know if they do that anymore, and they're heavy as heck, for somebody with eight pounds. Her shoes were about this big, but -- and you had this big metal bar, and she had to stay in them 24 hours a day. I mean, all of that didn't help her development, you know, but her feet finally -- I mean, she had no heel or anything. They were able to build a beautiful foot for her on both feet, but all of that I think helped delay her, you know, and telling me all the time to keep her away from people so she didn't get sick because of her heart, and she would sit for hours and just look at her hands, and none of those things I thought helped her development, and I felt that way strongly, that she really needed stimulation. And this program did give you that kind of stuff. It was kind of -- it was a lot of physical and occupational therapy that I'm sure I could have got from a physical and occupational therapist, but she had to learn to crawl, and so we put this bar on her back, and I felt so bad, you know, for her, because she was a tiny little thing, and she had this big bar on her back, and he'd try to roll, and she couldn't go anywhere. And my mother goes out with me one day, because I would go out at least once a week. My aunt would come and stay with her so I could just escape, because people would be coming to my house four and five times a day, and as I said Vince continued working two jobs, so a lot of it was, you know, basically me doing it. My mother goes with me and I leave her in the mall, and I come back in awhile and she's got all these ladies she's talking to, and she said this is my daughter with the retarded child. At that time, that was not considered a dirty word, but -- and she said, and she puts a cross on her back. And I was like, oh my god, these people are going to think that I'm abusing this kid. But you know what, in about five or six weeks, one day, just like that, she got up on her knees, and it's like she didn't even know she had them, you know, and you know, she did learn to hop. She never learned to crawl. Even though we taught her, we had this big table, and you would lay with her extended -- with her head extended up, off the table, and you would actually teach her to crawl, and you would have to do the opposite arm and leg. It was very tedious, and she didn't seem to mind it. She never fought us or anything, but I think it helped her muscles. I think it helped her stimulate her, and just like that one day, you know, she did start to hop around the house. She would hop, and then she became a great hopper, just like she was a great roller, and they always felt that you needed to crawl, but she never did attain that. And then just like that, one day she got up on her legs. By then she was probably around two and a half, three, and when she got up you couldn't stop her. She was very hyperactive. She was -- she was a handful, but you still wanted her up and walking.

06:02:25:21 - 06:03:46:09 Lisa: How did you communicate with Gina? Could she communicate with you easily?

Dee: Actually, it was really hard to tell if you were making contact with her. She most often didn't give you eye contact. She didn't smile very often. She seemed very within herself, and part of this program was also that you would play tapes. So I would put these tapes on and leave her and listen to these tapes over and over again, and it would be words, and also everywhere in the house we would put like we would put a sign, table, light, chair, and she did start to say a word or two during that time, but part of this program also required you to take them in a dark room and shoot a flashlight in their eyes, off and on, and then Gina started to have terrible seizures. And besides that, after two years, I was pretty exhausted. So we kind of gave it up, you know, and went on from there, trying to seek other ways of helping her.