WEBVTT 1 00:00:19.320 --> 00:00:20.720 You 2 00:00:32.920 --> 00:00:47.000 Hi, my name is Johnny Murtmuth. I live over there. I'm eight and a half. I lived in a hospital a long time. They did a movie on me. I can't remember. 3 00:00:48.500 --> 00:01:08.740 The reason Donnie doesn't remember is that he was only three and a half years old when the film was made and at that time had spent almost all of his life in the intensive care unit of Children's Memorial Hospital, undergoing more than a dozen operations, including the removal of a lung and a tracheotomy. 4 00:01:10.420 --> 00:01:20.240 The ICU is constantly receiving admissions from elsewhere in the hospital, from the emergency room of very ill children and receiving patients who have undergone major surgery in the operating rooms. 5 00:01:21.560 --> 00:01:32.780 Perhaps Donnie is too young to be influenced by these disasters and to make the transition feeling that this is going to happen to him. And perhaps an older child might be more influenced by these events. 6 00:01:32.780 --> 00:01:42.020 Perhaps also the ICU has become home to him and he really doesn't, does not consider what's happening, just considers this routine daily life. 7 00:01:42.620 --> 00:01:51.960 Possibly he'll never get out of it. You know, he's like the hope he would. It's got a lot to do with your moods and it's like, you know, if you're feeling down then, you know. 8 00:01:51.960 --> 00:02:03.640 Some days when he looks really good you think, oh boy, maybe this is it. He's going to start coming around and then he has a little setback and you think, oh gosh. 9 00:02:04.360 --> 00:02:15.240 He's got a chance to see a little bit of life. You know, it seems to be a meaning for him to be alive. If a baby is born and dies a month later, you know, what was the purpose at all for it? 10 00:02:15.340 --> 00:02:17.960 Well now you can say he has had some happiness. 11 00:02:19.440 --> 00:02:29.820 When Donnie was first born the outlook wasn't very good. We, besides all his physical disabilities, there seemed to be some question of his mental capabilities in the future. 12 00:02:30.400 --> 00:02:44.300 Whether he would be blind and deaf and he is not any of those things. He does everything any other child could do. He is just kind of hooked up to equipment. 13 00:02:44.580 --> 00:02:47.400 But the technology is there and we can use it. 14 00:02:53.160 --> 00:03:02.700 At the time of Donnie's birth no one could have predicted what his future would be. In fact, there is still some question as to what his adult life might be like. 15 00:03:03.580 --> 00:03:07.700 There is a serious philosophic issue that relates to Donnie and children like him. 16 00:03:08.580 --> 00:03:15.960 Donnie's progress has surprised, even amazed us. How could we have predicted this outcome at the time he was born? 17 00:03:17.200 --> 00:03:20.400 Should someone have made the decision to let him die at that time? 18 00:03:21.620 --> 00:03:30.020 Of course we don't think so now, nor did the medical staff think so then. Their efforts to save him were aided by Donnie's indomitable spirit. 19 00:03:31.220 --> 00:03:36.120 At the age of eight and a half it is that same spirit that keeps him flourishing at home. 20 00:03:42.820 --> 00:03:43.620 Music 21 00:04:00.880 --> 00:04:03.380 I asked Donnie how he was doing. 22 00:04:04.700 --> 00:04:11.220 Well, you can tell I am getting better because I am at home. I think you need family to get better. 23 00:04:12.560 --> 00:04:19.460 Home care is better for children like Donnie with respect to growth, development and general life satisfaction. 24 00:04:20.600 --> 00:04:25.760 It turns out that it is also much more inexpensive than care in the hospital. 25 00:04:26.780 --> 00:04:30.760 You forget he has a handicap because he doesn't consider himself handicapped. 26 00:04:31.880 --> 00:04:47.460 So when you meet Donnie you may first see all his equipment and his tracheotomy, but you only have to be with him a few minutes to suddenly not notice this because he has a very nice personality and he is happy and he is loving and he has a lot of good qualities. 27 00:04:47.480 --> 00:04:48.080 Hi John. 28 00:04:48.460 --> 00:04:50.080 You don't think of him as handicapped. 29 00:04:52.400 --> 00:04:59.140 Donnie probably is our greatest joy. He is a delight to be with. He is a tremendous child. 30 00:05:00.200 --> 00:05:03.700 I asked Donnie what he thought about the doctors that took care of him. 31 00:05:03.700 --> 00:05:13.180 The doctors are good. They saved my life almost. I almost could die because they thought I would never talk or nothing so they thought I would die. 32 00:05:13.600 --> 00:05:22.540 But then the doctors said no way, we have to save this kid and they did. They saved my life and I think they can do that for our kids. 33 00:05:23.160 --> 00:05:25.160 Do you remember anything about the hospital? 34 00:05:26.040 --> 00:05:35.820 Well, I remember some of my friends. Their names are Benji, he is still there and Dores and me. 35 00:05:36.160 --> 00:05:42.580 We used to be good friends and he was one of the nurses who used to call us the three musketeers. 36 00:05:43.080 --> 00:05:45.940 Does your equipment keep you from doing a lot of things? 37 00:05:45.940 --> 00:05:59.120 I do pretty good and I can't run and I have to stand by there and I can't go outside. My friends could. They can skate and I have a knife that I am getting operated on. It won't bend. 38 00:05:59.440 --> 00:06:11.060 So I can't roller skate or ice skate or do many things. But I think that mostly I can do more things than I can't. So no. 39 00:06:11.960 --> 00:06:13.160 Do you ever feel sad? 40 00:06:14.800 --> 00:06:24.180 Well, really I don't really feel sad. I just feel sad sometimes when my friends make fun of me. 41 00:06:24.180 --> 00:06:36.080 And when I just think back of all those kids in the hospital and I feel sad for them because they can't go home and do the things I can like Benji. 42 00:06:36.080 --> 00:06:48.000 He is a home senior. I care for him. I think that people should help those people that are at the hospital come home instead of staying at the hospital. 43 00:06:50.120 --> 00:06:57.980 Ironically, it is much more difficult to obtain the lesser funds for home care than the greater funds for hospital care. 44 00:06:58.260 --> 00:07:04.060 Either from insurance companies or various of the government agencies that support care. 45 00:07:04.980 --> 00:07:11.540 Another difficulty in arranging for home care is the so-called spend-down formula. 46 00:07:13.660 --> 00:07:26.220 This means that the state would only provide financial assistance after the parents have been reduced to the poverty level by spending the bulk of their income on the child's medical care. 47 00:07:29.780 --> 00:07:35.580 Since Donnie came home the electric bill has gone up probably 50 percent I imagine. 48 00:07:37.660 --> 00:07:44.600 And we had to put a room addition on the house so that put another mortgage on the house. And you are expected to pay that too. 49 00:07:45.740 --> 00:07:52.360 Plus your taxes go up because you have got more living space. Taxes almost doubled. 50 00:07:53.160 --> 00:07:59.920 See I think parents could do some work but the doctors don't know that. I think they could try it out. 51 00:08:00.280 --> 00:08:09.240 See we, one time we had a meeting and we brought some kids home over here to see what, to tell them what it was like about. 52 00:08:09.820 --> 00:08:14.300 The group is called Concerned Parents for Ventilator-Dependent Children. 53 00:08:14.300 --> 00:08:23.400 And we all have ventilator or respiratory dependent children and quite a few of them are living at home now. 54 00:08:24.140 --> 00:08:35.340 So we are trying to be organized and get funding for our children and get funding for other children to come home from the hospital and be able to live at home with their families. 55 00:08:35.340 --> 00:08:46.700 I would like to have a group like that and I would like to tell people like, they will tell them about what everybody should do about the kids. 56 00:08:47.460 --> 00:08:57.580 I think our faith and religion has helped us deal with Donnie's problems better than if we didn't have a faith or religion to believe in. 57 00:08:58.840 --> 00:09:07.580 We pray a lot that Donnie will someday be able to function on his own and every day he seems a little closer to that goal. 58 00:09:08.780 --> 00:09:16.660 Donnie and I have a faith in God and it has helped us to get through some of the crises that happened to Donnie. 59 00:09:16.940 --> 00:09:24.980 He believes that Jesus will help him get through all his problems and every day he seems to get closer to that goal. 60 00:09:27.580 --> 00:09:30.780 What is it like being home compared to the hospital? 61 00:09:31.840 --> 00:09:41.360 Well, I think it's better at home because at the hospital all you do is the nurse comes in to give you a shot and then all that stuff. 62 00:09:41.580 --> 00:09:52.080 But at home you can do all sorts of stuff. You can play, you can play games, you can watch TV and then on Fridays I go to school. 63 00:09:53.120 --> 00:09:55.580 Donnie, can you tell us how to spell sling? 64 00:09:55.580 --> 00:09:59.020 S-L-I-N-G. 65 00:09:59.020 --> 00:10:00.700 Can you make a sentence with sling? 66 00:10:02.760 --> 00:10:10.240 I, after I had my broken arm I had to have a sling. 67 00:10:10.580 --> 00:10:17.160 You had a sling. Alright. Now we had another one. I asked you how to spell the little girl's name Robin. Do you remember? 68 00:10:18.580 --> 00:10:25.020 R-O-B-R-I-N. 69 00:10:25.020 --> 00:10:36.920 Alright, that was good. Now remember a noun has to be something you can see or feel. What were some of the things that we had that weren't things that you could really see? What Donnie? 70 00:10:37.200 --> 00:10:37.720 Sound. 71 00:10:38.160 --> 00:10:40.820 A sound would be a noun. Can you think of something else? 72 00:10:42.660 --> 00:10:45.640 No, I can't hear. Air? 73 00:10:45.840 --> 00:10:46.920 Air, that's a good one. 74 00:10:47.780 --> 00:10:49.760 Sky, clouds, God. 75 00:10:50.360 --> 00:10:52.780 Okay, but you could see a cloud, couldn't you? 76 00:10:52.780 --> 00:10:56.940 Yeah, it's kind of really feeling because it's like a ghost. 77 00:10:57.320 --> 00:10:59.760 Yeah. Right? We're like a ghost. 78 00:11:00.300 --> 00:11:01.780 This pie has many pieces. 79 00:11:02.860 --> 00:11:03.920 I can tell. 80 00:11:04.920 --> 00:11:06.320 How many pieces in all? 81 00:11:06.700 --> 00:11:10.760 It's really nice being at home and having two of those. 82 00:11:10.760 --> 00:11:13.920 Eight pieces. How many pieces are colored red? 83 00:11:14.100 --> 00:11:14.360 Three. 84 00:11:14.740 --> 00:11:19.480 So what fraction of the pie is colored red? 85 00:11:19.480 --> 00:11:20.400 Three. 86 00:11:20.400 --> 00:11:22.480 Put down here. 87 00:11:24.580 --> 00:11:24.840 Eight. 88 00:11:25.680 --> 00:11:28.340 So, three eighths. 89 00:11:28.400 --> 00:11:31.280 Three eighths of the pie is red. 90 00:11:31.860 --> 00:11:35.300 Little Mouse Deer is eating fruit from the fruit trees. 91 00:11:36.680 --> 00:11:41.860 Good. I think I'll pick some more of those to take home with me. 92 00:11:42.680 --> 00:11:47.980 How dare you take my fruit from my tree? 93 00:11:47.980 --> 00:11:49.280 Nine. 94 00:11:50.240 --> 00:11:52.220 Do people ever get upset with you at home? 95 00:11:52.940 --> 00:11:58.860 Well, that's a very good question. Yes, yes, yes. 96 00:12:01.360 --> 00:12:07.600 Sometimes, see, I wrote a note that said, I wrote a note to my mom and dad. 97 00:12:08.360 --> 00:12:09.540 It said, goodbye. 98 00:12:10.440 --> 00:12:17.500 I thought they would understand that I was going away, running away because I wrote two notes. 99 00:12:17.980 --> 00:12:21.500 And the second one I wrote to my sisters and brothers. 100 00:12:21.860 --> 00:12:28.020 I said, I know I get on your nerves sometimes, but I don't mean to. 101 00:12:28.260 --> 00:12:34.960 And then that night, that next night, my sister was thinking about that all day. 102 00:12:36.100 --> 00:12:40.760 And when I came to say good night to her, she said, you don't get on my nerves. 103 00:12:40.840 --> 00:12:41.720 And I said, what? 104 00:12:42.200 --> 00:12:43.900 And she said, about that letter. 105 00:12:43.900 --> 00:12:51.100 And so, now, now, now, my name, they might tell the truth. 106 00:12:53.020 --> 00:12:54.860 Have you ever run away from home, Donnie? 107 00:12:55.380 --> 00:12:58.220 Well, I have done that twice. 108 00:13:00.200 --> 00:13:02.680 And what was your reason for running away twice? 109 00:13:06.480 --> 00:13:10.680 Okay, I sometimes feel like I'm not lying here. 110 00:13:10.680 --> 00:13:14.880 I just don't. You can understand that, Mom. 111 00:13:15.720 --> 00:13:23.840 I really don't understand it, but it's just tricky being home and it's hard. 112 00:13:24.440 --> 00:13:28.820 And so, I run away twice. I hope you can understand that, Mom. 113 00:13:29.140 --> 00:13:29.900 I understand. 114 00:13:31.320 --> 00:13:31.680 Good. 115 00:13:33.800 --> 00:13:38.220 Let me ask another question. You said before that other kids tease you. 116 00:13:38.320 --> 00:13:38.760 Yeah. 117 00:13:38.760 --> 00:13:40.520 Can you tell me what they say? 118 00:13:40.800 --> 00:13:47.680 Well, okay. Now, this is a good... My friend got it to me. 119 00:13:47.960 --> 00:13:54.020 Okay, I was playing at his house and he's like, no, I said, can we do something? 120 00:13:54.260 --> 00:13:55.500 He said, like what? 121 00:13:56.160 --> 00:14:02.180 I go, play basketball or something because he has balls and baskets. 122 00:14:02.620 --> 00:14:05.320 And he said, you're boring. 123 00:14:05.320 --> 00:14:08.140 And I'm like, what can we do? 124 00:14:08.560 --> 00:14:18.940 I'm like going, well, Sean, do you... I think you're playing to me that I can't do things that other kids can do. 125 00:14:19.360 --> 00:14:23.320 And he said, well, he's trying not to say it out. 126 00:14:23.640 --> 00:14:24.920 He's trying not to hurt my feelings. 127 00:14:24.960 --> 00:14:29.460 I'm like going, uh-huh, I can understand. I see what you're saying. 128 00:14:30.260 --> 00:14:35.300 Do your brothers and sisters spend time with you or do they think you're too much of a kid? 129 00:14:36.220 --> 00:14:43.280 I think they want to spend some time with me, but I feel sometimes like they don't want me. 130 00:14:44.240 --> 00:14:47.040 And then I think, well, maybe they are. 131 00:14:48.600 --> 00:14:53.880 And then, see, my sister, one sister, she plays cards. 132 00:14:53.880 --> 00:14:57.380 We have bets, you know, who could win. 133 00:14:58.000 --> 00:15:02.600 And she plays games with me and stuff, so I think it's nice. 134 00:15:04.160 --> 00:15:05.660 Look what you did again. 135 00:15:05.980 --> 00:15:06.180 No. 136 00:15:09.560 --> 00:15:11.280 Uh-uh, you have to. 137 00:15:11.960 --> 00:15:12.620 Come on. 138 00:15:13.820 --> 00:15:15.500 No, you can't be a cheater. 139 00:15:15.920 --> 00:15:16.880 Okay, uh... 140 00:15:17.540 --> 00:15:18.240 This is a nickel. 141 00:15:19.620 --> 00:15:22.800 No, no, put the black check because that's what you did. 142 00:15:22.800 --> 00:15:25.020 No, I can't. 143 00:15:25.060 --> 00:15:25.720 Come on, Jan. 144 00:15:26.100 --> 00:15:27.800 You picked up the card. 145 00:15:28.380 --> 00:15:30.200 Now can I put it? 146 00:15:30.200 --> 00:15:30.620 No. 147 00:15:31.340 --> 00:15:37.500 When Donnie was in intensive care, he wasn't able to get out and play ball, 148 00:15:37.540 --> 00:15:46.460 or he wasn't able to go to the store to buy groceries or be outside with his brothers and sisters. 149 00:15:46.760 --> 00:15:50.560 And he works on the race car with his brother in the summertime. 150 00:15:51.680 --> 00:15:55.280 There's just so many things that he could never do that he can do. 151 00:15:55.720 --> 00:15:59.140 He just needs a little equipment to do it. 152 00:15:59.640 --> 00:16:01.460 A little extra tubing sometimes. 153 00:16:02.380 --> 00:16:06.820 As a matter of fact, last summer his brother drives a midget racer, 154 00:16:07.280 --> 00:16:10.260 and once a year they have big wheel races. 155 00:16:11.020 --> 00:16:14.760 Well, Donnie's got a leg that's stiff from IVs, 156 00:16:14.860 --> 00:16:17.620 so we got him a little cart that he can operate by hand, 157 00:16:17.760 --> 00:16:20.460 and we put a little carrier behind it for his oxygen. 158 00:16:20.560 --> 00:16:24.280 And he's racing against kids from 8 to 12 years old. 159 00:16:24.740 --> 00:16:28.620 The wheels on this one, every time he turns, his hands go around, 160 00:16:28.800 --> 00:16:30.540 the wheel turns three quarters of a turn, 161 00:16:30.960 --> 00:16:35.500 and the wheel is only about six inches compared to about a 16 inch wheel on a big wheel. 162 00:16:36.060 --> 00:16:38.780 But he raced, he made the quarter of a mile. 163 00:16:40.840 --> 00:16:42.140 He was last. 164 00:16:42.960 --> 00:16:47.100 They were giving out the trophies when he came across the finish line, but he did it. 165 00:16:47.560 --> 00:16:49.840 What is it you'd most like to be when you grow up? 166 00:16:50.740 --> 00:16:58.140 Well, I've been thinking about that, and I do want to be a race car driver. 167 00:16:59.040 --> 00:17:04.820 But then I was thinking, if I don't have this trade gal or nothing, I can't do that. 168 00:17:05.340 --> 00:17:07.440 So then I'm thinking about something else. 169 00:17:09.680 --> 00:17:14.260 But I'm trying to get as close as I can get to a race car driver. 170 00:17:14.260 --> 00:17:20.900 I would like to be a mechanic or a owner of this. 171 00:17:21.520 --> 00:17:25.340 And I think, you know, I think it would be nice. 172 00:17:26.100 --> 00:17:29.540 I'm not sure what I want to be, but that's my decision. 173 00:17:34.900 --> 00:17:40.260 The question of payment for home care for children like Donnie should be an easy one. 174 00:17:41.440 --> 00:17:44.640 Since care is more inexpensive at home, 175 00:17:45.300 --> 00:17:52.100 reasonable people will find a means to provide the funding without reducing the parents to the poverty level. 176 00:17:55.340 --> 00:17:57.700 It's a wonderful privilege to know Donnie. 177 00:17:58.740 --> 00:18:01.240 Rather than giving, one takes. 178 00:18:02.440 --> 00:18:08.220 The end result is to feel a little bit prouder to be a member of a society that cares. 179 00:18:37.700 --> 00:18:40.500 The end result is to feel a little bit prouder to be a member of a society that cares. 180 00:18:40.500 --> 00:18:40.500 181 00:18:40.500 --> 00:18:40.500 182 00:18:40.500 --> 00:18:40.500 183 00:18:44.200 --> 00:18:45.620 Thank you.