1 00:00:02,000 --> 00:00:07,000 Downloaded from YTS.MX 2 00:00:08,000 --> 00:00:13,000 Official YIFY movies site: YTS.MX 3 00:00:29,377 --> 00:00:32,162 and she was in full-blown seizure, 4 00:00:33,511 --> 00:00:37,341 and I heard Jim scream and I jumped up and ran in there 5 00:00:37,515 --> 00:00:42,651 and, oh, I seen the fear, oh, the despair in Jim's voice. 6 00:00:45,697 --> 00:00:49,179 "Dan, you got to watch her, Dan, I got to call 911." 7 00:00:51,268 --> 00:00:52,791 And her eyes were rolling in the back of her head 8 00:00:52,965 --> 00:00:57,709 and she was just shaking and it was so scary, so scary. 9 00:01:00,408 --> 00:01:02,627 And when that was all, when she came home from the hospital, 10 00:01:02,801 --> 00:01:04,325 it was like nothing happened. 11 00:01:05,195 --> 00:01:06,718 She was smiling. 12 00:01:06,892 --> 00:01:09,286 She was smiling when she walked in the door, 13 00:01:10,461 --> 00:01:13,682 and I was like, "Jamie, 14 00:01:16,424 --> 00:01:17,381 if that's God's love, well, then I believe, I believe." 15 00:02:29,149 --> 00:02:29,801 - I'm sorry about that. 16 00:02:29,975 --> 00:02:31,455 - Huh? 17 00:02:31,629 --> 00:02:35,242 - Huntington's disease is a progressively 18 00:02:35,416 --> 00:02:39,159 degenerative neurological disorder. 19 00:02:39,333 --> 00:02:40,421 It's inherited. 20 00:02:40,595 --> 00:02:41,857 You can't catch it from anyone. 21 00:02:43,206 --> 00:02:44,816 You could share a cup with someone 22 00:02:44,990 --> 00:02:48,342 with Huntington's disease, it's never going to affect you. 23 00:02:48,516 --> 00:02:53,434 However, what happens is you get extra copies of a gene 24 00:02:54,652 --> 00:02:58,308 that overproduces protein in your brain 25 00:02:58,482 --> 00:03:00,484 and what that results in 26 00:03:00,658 --> 00:03:04,619 is it literally eats holes in parts of your brain 27 00:03:04,793 --> 00:03:08,797 that control motor function first, usually. 28 00:03:16,631 --> 00:03:18,241 - There you go, you're doing good. 29 00:03:18,415 --> 00:03:21,766 - And then of course, there's no cure for Huntington's. 30 00:03:23,377 --> 00:03:27,816 You can only try to remediate symptoms as they appear, 31 00:03:29,426 --> 00:03:31,559 but it is relentlessly progressive, 32 00:03:31,733 --> 00:03:35,693 which means it never ceases to get worse 33 00:03:35,867 --> 00:03:38,827 until it takes the victim. 34 00:03:39,915 --> 00:03:41,351 I hate to use the word victim, 35 00:03:42,526 --> 00:03:44,398 but until it takes the patient's life. 36 00:03:47,270 --> 00:03:49,272 - You ready for your rows? 37 00:03:49,446 --> 00:03:51,796 Okay, how many are you going to do? 38 00:03:56,236 --> 00:03:57,541 - 25, okay. 39 00:03:57,715 --> 00:03:59,674 Two, three. 40 00:04:04,592 --> 00:04:07,769 - Hi, I'm Jamie and I'm 34-years old. 41 00:04:11,686 --> 00:04:12,252 - Good job 42 00:04:13,470 --> 00:04:16,691 Four, five, you want to switch legs? 43 00:04:16,865 --> 00:04:18,170 - No. 44 00:04:18,345 --> 00:04:19,694 - You want to keep going? 45 00:04:19,868 --> 00:04:20,738 - Yes. 46 00:04:22,479 --> 00:04:23,654 - You're kind of a show off today. 47 00:04:26,440 --> 00:04:28,529 - We knew enough about it, 48 00:04:28,703 --> 00:04:31,532 that this is not a disease you want. 49 00:04:31,706 --> 00:04:34,186 You know, I'd already had one friend die 50 00:04:34,361 --> 00:04:35,797 of Lou Gehrig's disease. 51 00:04:35,971 --> 00:04:37,842 I've had, you know, different people in my life 52 00:04:38,016 --> 00:04:39,888 who've had neurological diseases 53 00:04:40,062 --> 00:04:41,498 and those have been terrible 54 00:04:41,672 --> 00:04:43,631 but Huntington's was the worst. 55 00:04:43,805 --> 00:04:46,547 - Reading the literature online about, you know, 56 00:04:46,721 --> 00:04:50,638 the lifespan, you know what the end game 57 00:04:50,812 --> 00:04:53,380 of that disease looks like, it's not very pretty. 58 00:05:39,817 --> 00:05:42,472 - And we left mom alone in that 59 00:05:42,646 --> 00:05:44,431 and she had the . 60 00:05:44,605 --> 00:05:45,649 - That was . 61 00:05:45,823 --> 00:05:47,608 - No, I think we left her alone. 62 00:05:50,611 --> 00:05:52,569 - She struggled a lot 63 00:05:52,743 --> 00:05:55,398 and although we had our own issues and we fought, 64 00:05:55,572 --> 00:05:57,226 I mean we're a year apart 65 00:05:57,400 --> 00:06:00,360 and she stole my clothes and I hated her for it. 66 00:06:00,534 --> 00:06:03,450 I've always been somewhat protective of Jamie. 67 00:06:06,409 --> 00:06:09,369 - Dancing for us, lovely. 68 00:06:15,026 --> 00:06:19,988 - We're close in age and grew up playing together 69 00:06:21,598 --> 00:06:24,732 and having our own lives as sisters together. 70 00:06:24,906 --> 00:06:26,864 So there were a lot of different dynamics 71 00:06:27,038 --> 00:06:28,300 in our relationship. 72 00:06:28,475 --> 00:06:29,911 - here. 73 00:06:35,569 --> 00:06:40,356 - A couple of girls with food all over their mouth. 74 00:06:40,530 --> 00:06:42,358 - That was not easy on our marriage. 75 00:06:44,186 --> 00:06:44,839 Two people that were pretty free and independent. 76 00:06:45,013 --> 00:06:46,362 That was like... 77 00:06:46,536 --> 00:06:48,799 - We went from freedom to two babies. 78 00:06:48,973 --> 00:06:51,976 - Yes, being held captive by two babies. 79 00:06:53,456 --> 00:06:55,545 - To then four years later having our son, Jacob. 80 00:06:55,719 --> 00:06:57,373 Praise the Lord, Jacob. 81 00:07:00,550 --> 00:07:01,725 Praise the Lord. 82 00:07:03,901 --> 00:07:04,685 You so funny. 83 00:07:05,816 --> 00:07:07,252 You're not going to praise the Lord? 84 00:07:09,167 --> 00:07:12,519 We had no idea how to be parents, no idea. 85 00:07:12,693 --> 00:07:14,390 They just became our little buddies. 86 00:07:16,479 --> 00:07:18,002 - One more, and this may be a faster song. 87 00:07:18,176 --> 00:07:19,743 You can show them how you broke it down. 88 00:07:19,917 --> 00:07:21,528 - Oh, someday, how we'll tease you with this. 89 00:07:21,702 --> 00:07:23,051 - Okay, this time I'm going to . 90 00:07:23,225 --> 00:07:24,574 - Oh, you look so lovely, Jacob. 91 00:07:25,793 --> 00:07:27,664 - For a large part of life, 92 00:07:27,838 --> 00:07:29,840 Jamie was like a mother figure. 93 00:07:30,014 --> 00:07:33,365 - No Jacob, don't pull this, no, no, no, no. 94 00:07:33,540 --> 00:07:35,890 - Our parents got really busy around the time 95 00:07:36,064 --> 00:07:38,849 after I came around with things at the church and whatnot. 96 00:07:39,023 --> 00:07:42,287 So Jamie and Micah definitely kind of 97 00:07:42,462 --> 00:07:43,767 took care of me for a while. 98 00:07:43,941 --> 00:07:45,508 - Another one, you literally would, 99 00:07:45,682 --> 00:07:47,467 first day you were home from the hospital. 100 00:07:47,641 --> 00:07:49,294 - Jamie, I spent most of my time 101 00:07:49,469 --> 00:07:51,296 being carried around by Jamie. 102 00:07:53,255 --> 00:07:56,084 - Look at that Jamie, you and your buddy, Jacob. 103 00:07:58,042 --> 00:07:59,783 - You know, maybe, it's never really dawned on me 104 00:07:59,957 --> 00:08:02,090 but maybe it's only fair that I spend a lot of my time 105 00:08:02,264 --> 00:08:03,439 carrying you around now, Jamie. 106 00:08:03,613 --> 00:08:04,614 - Oh, look at that. 107 00:08:04,788 --> 00:08:05,963 - You do carry her. 108 00:08:07,791 --> 00:08:09,358 - Yeah, that's true J. 109 00:08:09,532 --> 00:08:11,099 - Tables have been turned. 110 00:08:11,273 --> 00:08:12,404 - Tables are turned, now he's carrying you, Jamie. 111 00:08:12,579 --> 00:08:14,450 - I bet you did a much better job. 112 00:08:14,624 --> 00:08:16,104 - Oh, I don't know. 113 00:08:16,278 --> 00:08:16,800 I think you got dropped a couple of times. 114 00:08:18,759 --> 00:08:22,545 - You know, she was teased a lot growing up and you know 115 00:08:22,719 --> 00:08:24,373 kids at school would say something about Jamie 116 00:08:24,547 --> 00:08:26,027 and it would make me so angry, 117 00:08:26,201 --> 00:08:27,898 or people at church would criticize Jamie, 118 00:08:28,072 --> 00:08:32,816 and, you know, all of that stuff, I was in the middle of it 119 00:08:32,990 --> 00:08:37,734 , trying to, you know, to protect her 120 00:08:37,908 --> 00:08:41,129 or to stand up for her. 121 00:08:46,613 --> 00:08:48,484 - Oh, fatherhood has gotten harder. 122 00:08:54,925 --> 00:08:56,797 - Jamie likes to see her dad work. 123 00:08:58,712 --> 00:09:00,496 She struggles with depression 124 00:09:00,670 --> 00:09:02,846 and those were really tough years. 125 00:09:03,020 --> 00:09:05,893 And I, we took her to counselors. 126 00:09:08,286 --> 00:09:09,897 Nothing seemed to help. 127 00:09:10,071 --> 00:09:11,115 - You parked up there and it started raining. 128 00:09:11,289 --> 00:09:12,377 We picked you guys up. 129 00:09:12,552 --> 00:09:13,248 Is it rainy now? 130 00:09:13,422 --> 00:09:14,945 Look at that. 131 00:09:15,119 --> 00:09:16,686 Okay, I'm looking at the water, is it rainy? 132 00:09:16,860 --> 00:09:18,122 - Barely . 133 00:09:19,080 --> 00:09:20,690 Dad, I want to get in the boat. 134 00:09:20,864 --> 00:09:25,521 - No, do not get in the boat, just wait. 135 00:09:41,755 --> 00:09:46,890 - I think that for a while I wanted try to fix it, and... 136 00:09:56,204 --> 00:09:58,772 - I think our relationship changed for a while 137 00:09:58,946 --> 00:10:00,904 where I was just like this young kid 138 00:10:01,078 --> 00:10:03,646 who didn't know why my sister was angry 139 00:10:03,820 --> 00:10:05,648 or why my sister was acting the way she did. 140 00:10:05,822 --> 00:10:08,651 So, you know, it changed, it changed a bit. 141 00:10:09,913 --> 00:10:13,264 - You know, you take it upon yourself to try to, 142 00:10:16,398 --> 00:10:17,921 you know, make sure she's doing the things 143 00:10:18,095 --> 00:10:21,098 that are important to to stay healthy or to be happy 144 00:10:21,272 --> 00:10:22,665 or to make things okay. 145 00:10:22,839 --> 00:10:25,973 And you can't, you know, in the end, you just, 146 00:10:27,365 --> 00:10:28,758 you can't... 147 00:10:31,805 --> 00:10:33,633 - I was very depressed. 148 00:10:47,777 --> 00:10:51,563 - I mean, she was probably, I would say 16-years old 149 00:10:51,738 --> 00:10:55,916 and she had a really wonderful boyfriend we really liked 150 00:10:56,090 --> 00:10:58,962 and they were getting along and life was good. 151 00:10:59,136 --> 00:11:03,663 And came home, and this was a normal day, 152 00:11:03,837 --> 00:11:06,143 and about maybe 11 o'clock at night 153 00:11:06,317 --> 00:11:07,754 she comes up to my room and said, 154 00:11:07,928 --> 00:11:10,582 "I just took a bottle full of Tylenol." 155 00:11:14,717 --> 00:11:16,153 We kind of looked at each other and said, 156 00:11:16,327 --> 00:11:17,807 "Well, I got to get her to the hospital." 157 00:11:17,981 --> 00:11:20,592 So I put her into my car and we went down there 158 00:11:20,767 --> 00:11:22,246 and she got her stomach pumped. 159 00:11:22,420 --> 00:11:26,076 And she ended up being, you know, inpatient 160 00:11:26,250 --> 00:11:28,688 for about a week, I think it was. 161 00:11:28,862 --> 00:11:31,560 We knew there was something going on in her that was bigger 162 00:11:31,734 --> 00:11:35,782 than we could understand or fix or address, it was big. 163 00:11:38,480 --> 00:11:40,177 Micah's day was yesterday, she caught some good fish. 164 00:11:40,351 --> 00:11:42,702 Jake, ready to go? 165 00:11:42,876 --> 00:11:45,269 - I think when it first happened, it didn't really sink in. 166 00:11:45,443 --> 00:11:48,098 Like I remember just visiting Jamie in the hospital 167 00:11:48,272 --> 00:11:51,319 and she had to go to like a mental health ward 168 00:11:51,493 --> 00:11:53,016 and we'd visit her there. 169 00:11:53,190 --> 00:11:56,019 And I remember just thinking, like, 170 00:11:56,193 --> 00:11:58,152 it didn't really feel real for a while. 171 00:11:58,326 --> 00:12:00,981 I don't think it was until like later that it actually 172 00:12:01,155 --> 00:12:04,288 like, I don't know, sunk in that, you know, 173 00:12:04,462 --> 00:12:06,203 my sister tried to kill herself. 174 00:12:08,945 --> 00:12:10,338 - We kind of went through then, 175 00:12:10,512 --> 00:12:13,036 I would say almost two years of different kind of 176 00:12:13,210 --> 00:12:18,085 hospitalizations and medications and psychiatrist 177 00:12:19,129 --> 00:12:20,565 to kind of figure this out. 178 00:12:20,740 --> 00:12:22,263 - And so we went to family therapy 179 00:12:22,437 --> 00:12:27,921 and I just remember being so disappointed after that. 180 00:12:29,009 --> 00:12:30,924 - All the things that we had tried and that doctors 181 00:12:31,098 --> 00:12:33,056 had told us were going on with Jamie were wrong 182 00:12:33,230 --> 00:12:36,016 and the ways we were trying to solve it were wrong. 183 00:12:37,321 --> 00:12:39,671 - You couldn't add anything up because here you are, 184 00:12:39,846 --> 00:12:41,804 and you know, to your mind, it's a happy home. 185 00:12:41,978 --> 00:12:43,719 We do normal things, you have a normal life, 186 00:12:43,893 --> 00:12:45,373 you have friends, you know? 187 00:12:45,547 --> 00:12:47,767 And it didn't add up to what we were seeing 188 00:12:47,941 --> 00:12:49,246 with the behaviors. 189 00:12:49,420 --> 00:12:51,205 The behaviors were just so severe. 190 00:12:52,902 --> 00:12:56,688 Jamie, let's see your eyes, I got you in your eyes, 191 00:12:56,863 --> 00:12:58,473 open your eyes. 192 00:12:58,647 --> 00:13:01,128 And I just remember feeling very lonely, very isolated, 193 00:13:01,302 --> 00:13:06,220 very like lost in this journey and we're alone in this. 194 00:13:08,004 --> 00:13:10,137 And I think it was, and I hadn't experienced loneliness 195 00:13:10,311 --> 00:13:12,313 in my life but that time I did. 196 00:13:12,487 --> 00:13:16,099 I just felt like who can I talk to? 197 00:13:16,273 --> 00:13:17,709 Because I felt, I just couldn't. 198 00:13:17,884 --> 00:13:20,843 - To be honest, we didn't feel safe 199 00:13:21,017 --> 00:13:23,759 in telling people about her suicide attempt 200 00:13:23,933 --> 00:13:27,067 because we felt like she would be judged. 201 00:13:27,241 --> 00:13:30,070 And we couldn't bear that for her. 202 00:13:30,244 --> 00:13:32,681 Or that, you know, we would be judged 203 00:13:32,855 --> 00:13:34,335 as you must not be good parents 204 00:13:34,509 --> 00:13:36,250 or you must not love God enough. 205 00:13:36,424 --> 00:13:41,951 And it was so frightening that we held it all to ourselves. 206 00:13:46,913 --> 00:13:48,697 You had the most beautiful clothes. 207 00:13:49,916 --> 00:13:51,352 - Look at that. 208 00:13:51,526 --> 00:13:52,744 Looks like a baby from the pioneer days. 209 00:13:55,878 --> 00:13:58,272 - Yeah, so cute. 210 00:14:00,143 --> 00:14:01,928 - Do you ever think of them, Jamie? 211 00:14:02,885 --> 00:14:04,365 - Yeah, little bit. 212 00:14:04,539 --> 00:14:05,975 - Leah and Jim? 213 00:14:06,149 --> 00:14:08,282 - Oh yeah, oh my god. 214 00:14:08,456 --> 00:14:09,805 They loved you, they loved you a lot. 215 00:14:09,979 --> 00:14:11,589 - Show them, Jake. 216 00:14:11,763 --> 00:14:15,245 - Jamie's ex, her ex-boyfriend Jason's parents. 217 00:14:15,419 --> 00:14:18,161 As a family we spent a lot of time together. 218 00:14:18,335 --> 00:14:21,382 - I'm connected with the Sorums purely by love. 219 00:14:21,556 --> 00:14:26,517 I adore them and have since the day we met 220 00:14:27,910 --> 00:14:30,173 and I can't even tell you when we met 221 00:14:30,347 --> 00:14:32,175 but I know it was through church. 222 00:14:32,349 --> 00:14:34,830 And then we were also neighbors. 223 00:14:35,004 --> 00:14:38,703 And then at some point in our relationship 224 00:14:38,878 --> 00:14:40,836 our kid started dating Jamie 225 00:14:41,010 --> 00:14:44,013 and our oldest son, Jason, started to date. 226 00:14:58,898 --> 00:15:00,464 - Yeah, Jason . 227 00:15:02,162 --> 00:15:06,296 - And I think Pat and I kind of had a lot to do with that. 228 00:15:06,470 --> 00:15:11,301 And Pat always said, if Jamie didn't marry Jason, she would. 229 00:15:12,650 --> 00:15:15,392 So that's how we got connected 230 00:15:15,566 --> 00:15:18,874 but I'm really connected to them through love. 231 00:15:19,048 --> 00:15:22,095 I just absolutely love and adore the Sorums. 232 00:15:22,617 --> 00:15:23,183 Always will. 233 00:15:24,575 --> 00:15:26,360 - How long did you date Jason? 234 00:15:26,534 --> 00:15:28,188 - For seven years. 235 00:15:30,668 --> 00:15:33,367 We were very close. 236 00:15:35,325 --> 00:15:36,457 - I've never liked any of my daughter's boyfriends. 237 00:15:38,198 --> 00:15:39,547 So I'll put it straight up that way. 238 00:15:39,721 --> 00:15:41,331 - Oh, you liked him, you liked Jason. 239 00:15:41,505 --> 00:15:42,942 - They all kind of, they're kind of jerks but, you know, 240 00:15:43,116 --> 00:15:44,247 I try and had to work with them. 241 00:15:44,421 --> 00:15:45,945 - Not true. 242 00:15:46,119 --> 00:15:48,251 - I can't tell you how it all actually all started, 243 00:15:48,425 --> 00:15:49,078 I just know... 244 00:15:49,252 --> 00:15:49,905 - I can. 245 00:15:50,079 --> 00:15:51,559 - Okay, tell me. 246 00:15:51,733 --> 00:15:54,127 - Well, what it was is the Sorums are game players. 247 00:15:54,301 --> 00:15:55,780 They love playing games, you know. 248 00:15:55,955 --> 00:15:56,781 - Board games. 249 00:15:56,956 --> 00:15:58,566 - Yeah, board games. 250 00:15:58,740 --> 00:16:00,437 And I'm like one of the last people, I can't stand them. 251 00:16:00,611 --> 00:16:02,874 Somebody comes over with a pile of board games, 252 00:16:03,049 --> 00:16:05,529 I'm like, "I think I got to go down to the lake. 253 00:16:05,703 --> 00:16:07,967 I hear a duck down there in distress." 254 00:16:08,141 --> 00:16:09,751 But you know, I can't stand it. 255 00:16:09,925 --> 00:16:12,275 Jason says, "Oh, we're all going over to Sorums tonight, 256 00:16:12,449 --> 00:16:13,494 we're going to have game night." 257 00:16:13,668 --> 00:16:16,279 And I'm like, please. 258 00:16:16,453 --> 00:16:17,846 But anyway, I go. 259 00:16:18,020 --> 00:16:19,543 You know what? 260 00:16:19,717 --> 00:16:21,197 After we started doing it, I was having fun. 261 00:16:21,371 --> 00:16:22,938 You know, I can't remember some of the crazy stuff 262 00:16:23,112 --> 00:16:25,854 we played, but that was one of the main things. 263 00:16:26,028 --> 00:16:27,638 We went over there for that. 264 00:16:27,812 --> 00:16:30,554 And then they started, you know, looking across the table 265 00:16:30,728 --> 00:16:32,992 and Jason, "Yeah, I think I like her." 266 00:16:33,166 --> 00:16:35,081 I said, "Yeah, she's a sweetheart." 267 00:16:41,609 --> 00:16:45,004 - Took them a while to kind of admit that they, you know, 268 00:16:45,178 --> 00:16:47,615 liked each other and wanted to hang out. 269 00:16:48,616 --> 00:16:49,573 - Yeah. 270 00:16:49,747 --> 00:16:51,010 Those dang board games. 271 00:16:51,184 --> 00:16:53,012 - Yeah. 272 00:16:59,061 --> 00:17:00,758 - But other than that- 273 00:17:00,932 --> 00:17:02,586 - They're part of our family, they were there all the time. 274 00:17:02,760 --> 00:17:06,112 - No, Jason was a good young man and they enjoyed many years 275 00:17:06,286 --> 00:17:09,898 of being together and it was a great time for Jamie 276 00:17:10,072 --> 00:17:11,465 to have a companion. 277 00:17:11,639 --> 00:17:13,597 - He loved her with all of his heart. 278 00:17:15,077 --> 00:17:19,125 He used to say to me, "Mom, isn't she beautiful? 279 00:17:20,126 --> 00:17:21,649 Mom, isn't she beautiful?" 280 00:17:38,144 --> 00:17:41,103 - Jamie's hair was more blonde as a baby. 281 00:17:41,277 --> 00:17:43,279 - Yeah, strawberry blonde, yeah, look at that. 282 00:17:43,453 --> 00:17:44,541 - I was a strawberry blonde. 283 00:17:44,715 --> 00:17:45,412 - Yeah, you are. 284 00:17:45,586 --> 00:17:46,369 You're a what? 285 00:17:46,543 --> 00:17:47,849 Strawberry blonde? 286 00:17:48,023 --> 00:17:49,459 - Like literally when almost, 287 00:17:49,633 --> 00:17:51,026 well just a little bit after we met Jamie, 288 00:17:51,200 --> 00:17:53,507 you were already bringing her home on Sundays. 289 00:17:55,291 --> 00:17:58,164 Just enjoying her until she went to her adopted home. 290 00:17:59,730 --> 00:18:01,776 this morning, Jamie. 291 00:18:02,733 --> 00:18:03,908 Look over here. 292 00:18:07,129 --> 00:18:08,348 - Jamie's adopted. 293 00:18:13,309 --> 00:18:14,658 Show me, can I see the baby's hand? 294 00:18:14,832 --> 00:18:16,182 You show mama. 295 00:18:17,226 --> 00:18:18,445 Show mama. 296 00:18:18,619 --> 00:18:20,099 - I think when you're up to 297 00:18:20,273 --> 00:18:23,450 about sixth, seventh grade, your life is just now. 298 00:18:23,624 --> 00:18:25,626 You know, this is my family, you don't question it, 299 00:18:25,800 --> 00:18:27,454 these are my mom and dad, you know. 300 00:18:27,628 --> 00:18:30,718 I think when she got into her maybe 15 or 16, 301 00:18:30,892 --> 00:18:35,505 I think it was in that time, when you become more curious 302 00:18:35,679 --> 00:18:38,421 about who you are and your identity, 303 00:18:38,595 --> 00:18:41,511 and then she began to ask questions about that. 304 00:18:41,685 --> 00:18:44,688 - She started noticing that she was different 305 00:18:44,862 --> 00:18:46,603 than her other two siblings. 306 00:18:46,777 --> 00:18:48,736 You know, Jamie's a little more introverted, 307 00:18:48,910 --> 00:18:50,129 they were more extroverted. 308 00:18:50,303 --> 00:18:52,131 She loved to read and write 309 00:18:52,305 --> 00:18:55,612 and they were busy doing extracurricular activities. 310 00:18:55,786 --> 00:18:59,486 And I think she started to feel like, you know, 311 00:18:59,660 --> 00:19:02,619 I wonder who my people are, you know, are they like me? 312 00:19:02,793 --> 00:19:06,319 And she did ask me if we could find her birth mom. 313 00:19:06,493 --> 00:19:09,017 - We always said, Jamie, are you interested? 314 00:19:09,191 --> 00:19:10,758 Should we pursue it? 315 00:19:10,932 --> 00:19:12,499 Do you want to, you know, we always had that door open 316 00:19:12,673 --> 00:19:15,197 and, you know, kind of gave her the lead. 317 00:19:15,371 --> 00:19:16,677 But it kind of became a dead-end street 318 00:19:16,851 --> 00:19:18,418 because it was a closed adoption 319 00:19:18,592 --> 00:19:22,509 and there was just no way we could open that. 320 00:19:22,683 --> 00:19:26,208 - We did have a sheet of paper that told her height, 321 00:19:26,382 --> 00:19:28,123 it told us that she was in college 322 00:19:28,297 --> 00:19:29,385 and what color her eyes were, 323 00:19:29,559 --> 00:19:31,300 and that meant a lot to Jamie. 324 00:19:31,474 --> 00:19:33,215 I made sure she had that. 325 00:19:33,389 --> 00:19:35,043 This is as much as we know about her 326 00:19:35,217 --> 00:19:37,437 and you are welcome to that information. 327 00:19:37,611 --> 00:19:38,438 - Yeah. 328 00:20:19,827 --> 00:20:23,570 - We had been watching Jamie struggle with symptoms, 329 00:20:24,745 --> 00:20:29,532 with tripping and having a hard time speaking 330 00:20:29,706 --> 00:20:33,449 and just insidious, those insidious symptoms 331 00:20:33,623 --> 00:20:36,539 that we were all wondering what the heck was going on? 332 00:20:36,713 --> 00:20:39,238 - She was falling a lot and shaking. 333 00:20:39,412 --> 00:20:42,328 And I think my mom was in a lot of 334 00:20:42,502 --> 00:20:44,243 she didn't want to, she was blind to it. 335 00:20:44,417 --> 00:20:46,114 She didn't want to acknowledge it was something bigger. 336 00:20:46,288 --> 00:20:48,247 So she was saying it was a reaction 337 00:20:48,421 --> 00:20:50,597 to the depression medication Jamie was on. 338 00:20:50,771 --> 00:20:52,642 - She would fall and that's what I was thinking it was. 339 00:20:52,816 --> 00:20:55,254 I was going to go and tell that counselor off, 340 00:20:56,603 --> 00:20:58,692 that you've given her too much medication. 341 00:20:58,866 --> 00:21:00,824 So when we got home, we did go to the doctor. 342 00:21:00,998 --> 00:21:05,394 We took her to the counselor and he said to us, 343 00:21:05,568 --> 00:21:07,309 "It is not the medication." 344 00:21:07,483 --> 00:21:09,659 He said, "You need to have her tested. 345 00:21:09,833 --> 00:21:12,096 You need to have a blood test and see if it's Parkinson's 346 00:21:12,271 --> 00:21:14,838 or, you know, what it is." 347 00:21:15,012 --> 00:21:19,147 Well, as soon as he said that, all the memories 348 00:21:19,321 --> 00:21:21,715 came flooding back to me about her history. 349 00:21:21,889 --> 00:21:23,238 - There's something in her past. 350 00:21:23,412 --> 00:21:24,848 - That there's something in her past. 351 00:21:51,484 --> 00:21:52,963 But I said to them, 352 00:21:53,137 --> 00:21:55,662 "You need to find her because something's wrong." 353 00:21:55,836 --> 00:21:58,752 But in my heart of heart I knew it was not going to be good. 354 00:22:00,362 --> 00:22:01,842 - First we had to get a lawyer. 355 00:22:02,016 --> 00:22:03,409 Then we had a petition a judge to open up the records 356 00:22:03,583 --> 00:22:05,454 and our doctor had to sign off on that, 357 00:22:05,628 --> 00:22:06,890 said this is a medical reason 358 00:22:07,064 --> 00:22:08,588 why we had to open these records. 359 00:22:08,762 --> 00:22:11,721 So we got them unsealed at the adoption agency 360 00:22:11,895 --> 00:22:13,636 and then we're able to get the information. 361 00:22:13,810 --> 00:22:15,377 And then right about that time... 362 00:22:15,551 --> 00:22:16,813 - It all happened at one time. 363 00:22:16,987 --> 00:22:18,641 - Then at one time that you got... 364 00:22:18,815 --> 00:22:20,208 Before, you could not test to see if you get Huntington's, 365 00:22:20,382 --> 00:22:23,211 but now they have a test and it showed positive, 366 00:22:23,385 --> 00:22:25,213 right about the time we got the information 367 00:22:25,387 --> 00:22:27,433 that her mom had this, so... 368 00:22:33,526 --> 00:22:35,789 - She was so excited. 369 00:22:35,963 --> 00:22:39,619 She called me and she was just, she's so bubbly anyway, 370 00:22:39,793 --> 00:22:41,577 even when she's not excited, she's bubbly, 371 00:22:41,751 --> 00:22:44,493 but she was just bubbling over that day. 372 00:22:44,667 --> 00:22:46,626 And she called me and she's telling me, 373 00:22:46,800 --> 00:22:50,456 "Oh Leah, I found my mom, she's in Indiana. 374 00:22:50,630 --> 00:22:55,286 And I have sisters and I have brothers and, oh..." 375 00:22:55,461 --> 00:22:56,984 You know, just going on and on. 376 00:22:57,158 --> 00:23:01,597 And she said, "But my mom, she's been in a nursing home 377 00:23:01,771 --> 00:23:03,643 for like the last seven years, 378 00:23:03,817 --> 00:23:06,428 she has Huntington's disease." 379 00:23:06,602 --> 00:23:11,477 And instantly I was just devastated. 380 00:23:14,523 --> 00:23:16,003 I was just devastated. 381 00:23:16,177 --> 00:23:17,874 - When we went into the doctor to get the results 382 00:23:18,048 --> 00:23:21,748 from her blood test, it's such a strange thing. 383 00:23:21,922 --> 00:23:24,925 But I, as a mother was just stricken 384 00:23:25,099 --> 00:23:29,277 because mothers are supposed to protect their children 385 00:23:29,451 --> 00:23:30,844 from all harm. 386 00:23:31,018 --> 00:23:33,934 And I just was like, you know, we adopted her. 387 00:23:34,108 --> 00:23:37,720 We have covered her, her whole life, 388 00:23:37,894 --> 00:23:41,420 raised this girl to be successful and happy 389 00:23:41,594 --> 00:23:45,249 and now I'm hearing she has this disease. 390 00:23:45,424 --> 00:23:46,512 I was heartbroken. 391 00:23:47,991 --> 00:23:51,038 We got through the phone call and we hung up 392 00:23:51,212 --> 00:23:53,780 and I just burst into tears. 393 00:23:53,954 --> 00:23:56,913 And Jason looked at me and he said, "Mom, what's wrong?" 394 00:23:58,132 --> 00:24:01,962 And I had to find the strength to tell my son 395 00:24:02,136 --> 00:24:05,356 that Jamie's mom had Huntington's disease. 396 00:24:05,531 --> 00:24:07,794 And of course he's in nursing school, 397 00:24:07,968 --> 00:24:10,710 so he knows about Huntington's also. 398 00:24:10,884 --> 00:24:16,063 And I watched my son's color drain from his face 399 00:24:17,978 --> 00:24:22,548 and I watched his head drop into his hands. 400 00:24:24,637 --> 00:24:28,728 And we just sat there, me sobbing and him in silence. 401 00:24:30,599 --> 00:24:33,080 - Now when I got diagnosed, 402 00:24:39,782 --> 00:24:42,089 I decided to break it off. 403 00:24:45,614 --> 00:24:50,793 I wanted him to be happy. 404 00:24:53,927 --> 00:24:55,842 - She said, "Jason, I want you to have a life. 405 00:24:56,016 --> 00:24:57,800 You need to go on and have a life. 406 00:24:57,974 --> 00:24:59,672 I can't make that journey with you." 407 00:24:59,846 --> 00:25:01,761 Which was shocking to me. 408 00:25:03,589 --> 00:25:06,983 - He told me, "I'm staying with her, I don't care what," 409 00:25:07,157 --> 00:25:07,810 he says. 410 00:25:09,072 --> 00:25:11,205 And I said, "I support you, anything you do." 411 00:25:12,946 --> 00:25:14,948 - We were still in the midst of talking about it all 412 00:25:15,122 --> 00:25:16,993 but she just took matters into her own hands 413 00:25:17,167 --> 00:25:20,083 and said, you know, "Jason, I want you to move on." 414 00:25:21,563 --> 00:25:25,567 - She gave Jason the gift of, you know, freedom. 415 00:25:25,741 --> 00:25:29,005 "Here, you need to go on and you need to marry 416 00:25:29,179 --> 00:25:32,400 and you need to be able to have children." 417 00:25:32,574 --> 00:25:36,709 And, you know, and it was a huge gift. 418 00:25:36,883 --> 00:25:40,016 And it's one that you don't really want to take 419 00:25:40,190 --> 00:25:42,715 but it was huge. 420 00:25:44,064 --> 00:25:49,199 So thank you, Jamie, but no, thank you, Jamie. 421 00:25:50,287 --> 00:25:51,898 I still love her to this day. 422 00:25:57,773 --> 00:26:00,863 - And then she takes this Austedo, this little blue pill, 423 00:26:01,037 --> 00:26:02,952 which is a new pill for Huntington's. 424 00:26:03,126 --> 00:26:06,390 So the last time she went to her Huntington's workshop 425 00:26:06,565 --> 00:26:08,915 they introduced this pill. 426 00:26:09,089 --> 00:26:11,570 And so we're trying it and she's been on it 427 00:26:11,744 --> 00:26:13,180 for several months. 428 00:26:13,354 --> 00:26:14,834 Honestly, we don't see much difference 429 00:26:15,008 --> 00:26:17,619 between this one and the one she was on before. 430 00:26:19,012 --> 00:26:24,191 - I watched her, you know, come from being able to walk, 431 00:26:28,369 --> 00:26:29,849 you know, many years ago 432 00:26:31,067 --> 00:26:36,203 and she would fall and it would hurt. 433 00:26:37,770 --> 00:26:42,862 And she would almost begin to cry but then she wouldn't. 434 00:26:44,080 --> 00:26:46,735 And I would be the one that would go in my room 435 00:26:46,909 --> 00:26:48,737 and I would sit and cry. 436 00:26:50,086 --> 00:26:55,048 I would cry for her because I knew how much it hurt. 437 00:27:01,402 --> 00:27:02,229 - You want to get in your chair? 438 00:27:02,403 --> 00:27:03,796 That's my baby girl. 439 00:27:03,970 --> 00:27:05,624 You know, that I just, her whole life, 440 00:27:05,798 --> 00:27:07,713 because I knew there was something in her background. 441 00:27:07,887 --> 00:27:10,063 And so my whole life, I prayed for her. 442 00:27:10,237 --> 00:27:12,935 You know, don't let this happen, let her have a normal life, 443 00:27:13,109 --> 00:27:15,808 you know, and you just want to guide her that direction. 444 00:27:15,982 --> 00:27:20,116 And all of a sudden it was here and we couldn't stop it. 445 00:27:20,290 --> 00:27:21,596 - You just kind of go numb for a while. 446 00:27:21,770 --> 00:27:23,337 You don't even want to look. 447 00:27:23,511 --> 00:27:25,165 I didn't even want to look at it for a while. 448 00:27:25,339 --> 00:27:28,690 I just kind of had to just let it sink in. 449 00:27:28,864 --> 00:27:30,866 - I think the moment where it really hit me, 450 00:27:31,040 --> 00:27:33,956 like how horrible things were going to get 451 00:27:34,130 --> 00:27:36,524 was when we were in Indiana and we were 452 00:27:36,698 --> 00:27:40,702 visiting Jamie's biological mom in the nursing home. 453 00:27:40,876 --> 00:27:43,009 And we walked in and there sits Angie 454 00:27:43,183 --> 00:27:46,752 and she's got like a helmet on because, you know, 455 00:27:46,926 --> 00:27:49,798 with Huntington's eventually you just are in a room 456 00:27:49,972 --> 00:27:53,019 and you roll around and, you know, you have no control. 457 00:27:53,193 --> 00:27:57,023 So I remember walking in and seeing Angie like that 458 00:27:57,197 --> 00:27:59,503 and just knowing that was Jamie's, you know, 459 00:27:59,678 --> 00:28:01,157 eventual future. 460 00:28:01,331 --> 00:28:03,986 And that was, I think, the moment where it was like 461 00:28:04,160 --> 00:28:08,382 shortly after her diagnosis, that I really understood. 462 00:28:17,870 --> 00:28:19,175 - I think the hardest thing for me 463 00:28:19,349 --> 00:28:23,005 and it's so silly, but you feel like, 464 00:28:23,179 --> 00:28:25,051 and maybe other Christians have felt this way, 465 00:28:25,225 --> 00:28:28,968 that you know, I've lived here for you my whole life. 466 00:28:30,186 --> 00:28:31,840 And could I just have this one thing? 467 00:28:33,059 --> 00:28:34,930 Could, you know, can my daughter be well? 468 00:28:36,192 --> 00:28:40,240 I think I had to have that conversation with God. 469 00:28:40,414 --> 00:28:41,850 I was upset. 470 00:28:42,024 --> 00:28:45,332 It's like, you know, I would do anything 471 00:28:45,506 --> 00:28:47,203 for her not to have this. 472 00:28:47,377 --> 00:28:51,947 And then you realize that the truth is we're not 473 00:28:52,121 --> 00:28:56,604 given a pass because we're Christians, but I wanted it. 474 00:28:56,778 --> 00:28:58,737 I wanted the pass and I thought, 475 00:28:58,911 --> 00:29:01,827 if there's anything I can do, you know? 476 00:29:02,001 --> 00:29:06,353 Anything I could do, I would to spare her from this journey. 477 00:29:07,397 --> 00:29:07,876 Whoops. 478 00:29:09,225 --> 00:29:12,054 - Jamie, are you ever afraid? 479 00:29:12,228 --> 00:29:13,012 - No. 480 00:29:19,409 --> 00:29:20,236 I am fearless. 481 00:29:21,803 --> 00:29:23,718 - Were you ever angry with God, Jamie? 482 00:29:23,892 --> 00:29:26,112 or asked why me, God? 483 00:29:27,330 --> 00:29:28,201 - No. 484 00:29:34,381 --> 00:29:36,078 I have no fear. 485 00:29:36,252 --> 00:29:39,255 You're not afraid. 486 00:29:46,393 --> 00:29:47,916 - There was a thorn 487 00:29:55,315 --> 00:29:58,318 and I pleaded with God three times 488 00:30:14,987 --> 00:30:16,423 and he said, "No." 489 00:30:22,559 --> 00:30:23,909 He said, "No. 490 00:30:40,882 --> 00:30:45,974 He said, "My grace is sufficient." 491 00:30:48,542 --> 00:30:50,370 My grace is sufficient. 492 00:31:08,040 --> 00:31:10,999 Yeah, I'm looking forward to it. 493 00:31:12,044 --> 00:31:13,872 I am going to dance. 494 00:31:22,924 --> 00:31:26,493 - I don't know if heaven exists, honestly. 495 00:31:28,495 --> 00:31:29,365 - It's something I haven't thought about 496 00:31:29,539 --> 00:31:30,323 in a long time. 497 00:31:31,977 --> 00:31:37,156 I thought about that a lot about probably like 10 years ago. 498 00:31:38,897 --> 00:31:40,376 - Of course. 499 00:31:40,550 --> 00:31:41,551 - Absolutely, absolutely. 500 00:31:43,075 --> 00:31:45,207 And Jamie's going to be queen of gin rummy 501 00:31:45,381 --> 00:31:49,385 when she gets there, she's going to kick some angel booty. 502 00:31:52,998 --> 00:31:55,783 - I do, you know, I do, I do. 503 00:31:55,957 --> 00:31:57,480 I choose to believe in heaven. 504 00:31:57,654 --> 00:32:02,572 I choose to believe that when I die that I, 505 00:32:04,139 --> 00:32:06,837 I don't know if it's right away or if it's, you know, 506 00:32:07,012 --> 00:32:09,362 it's like going to sleep and waking up. 507 00:32:11,364 --> 00:32:16,151 But I hope that when I do wake up that my mother's face 508 00:32:17,500 --> 00:32:20,329 is staring at me, and my father, she says, 509 00:32:20,503 --> 00:32:22,157 "Welcome home Dan." 510 00:32:22,331 --> 00:32:24,246 - You know, it seems like it would be just to have a heaven 511 00:32:24,420 --> 00:32:26,596 but I just don't know if that exists. 512 00:32:29,643 --> 00:32:32,298 - Yeah, I guess that the afterlife aspect of all this 513 00:32:32,472 --> 00:32:35,518 is something that I haven't really come to terms with yet. 514 00:32:39,131 --> 00:32:44,266 - I have no idea other than it's the dimension of life 515 00:32:46,094 --> 00:32:47,878 that we have no idea what it is. 516 00:32:48,053 --> 00:32:50,055 There's so many dimensions of life. 517 00:32:50,229 --> 00:32:51,970 And the older we get you realize 518 00:32:52,144 --> 00:32:54,885 that the greatest dimension of life is love. 519 00:32:55,060 --> 00:32:56,583 It's a grace dimension. 520 00:32:56,757 --> 00:32:58,933 I mean, whatever else goes, fails, whatever, 521 00:32:59,107 --> 00:33:00,500 love is the greatest dimension. 522 00:33:00,674 --> 00:33:03,155 So I think heaven is a greater dimension of love. 523 00:33:03,329 --> 00:33:05,244 God is love and wherever you are, there's love. 524 00:33:05,418 --> 00:33:07,376 So whatever that dimension looks like, 525 00:33:07,550 --> 00:33:08,899 it's going to be a lot about love. 526 00:33:09,074 --> 00:33:10,771 - When my kids were little, 527 00:33:10,945 --> 00:33:14,296 I get up in the night to make sure they had their covers on. 528 00:33:14,470 --> 00:33:16,342 I wouldn't stand the thought of them being cold. 529 00:33:18,213 --> 00:33:19,040 I would always put them in these sleeper pajamas. 530 00:33:19,214 --> 00:33:20,563 - 90 degrees . 531 00:33:20,737 --> 00:33:22,348 They were already zipped up and warm 532 00:33:22,522 --> 00:33:24,872 and I'd still get up and make sure their covers are on. 533 00:33:25,046 --> 00:33:26,874 And the thought of her leaving, 534 00:33:27,048 --> 00:33:28,615 the thought of her leaving me, 535 00:33:29,746 --> 00:33:32,488 I'm her mom, I'm her protector. 536 00:33:32,662 --> 00:33:37,624 And just for that, it's just in my faith, 537 00:33:39,234 --> 00:33:42,455 just a brief moment when she's going to leave our arms 538 00:33:44,109 --> 00:33:46,067 but she's going to enter a place where 539 00:33:46,241 --> 00:33:49,157 those who've gone before us are going to take her hand 540 00:33:49,331 --> 00:33:51,203 and that does give me comfort. 541 00:33:51,377 --> 00:33:52,856 - You're going to release her to love. 542 00:33:53,031 --> 00:33:57,296 - Yeah, my mom who was a force and your mom, 543 00:33:58,471 --> 00:34:01,169 they will be the next one that take her hand. 544 00:34:12,702 --> 00:34:14,487 - I am going to die. 545 00:34:20,493 --> 00:34:25,498 I have found purpose because of my illness. 546 00:34:28,196 --> 00:34:30,720 There is a new peace. 547 00:36:08,557 --> 00:36:12,170 - She knows something that I don't. 548 00:36:13,214 --> 00:36:14,476 She knows joy. 549 00:36:15,869 --> 00:36:19,873 She knows a lot of joy and she has faith and she has hope. 550 00:36:26,575 --> 00:36:31,058 Yes, yeah, that smile is what breaks my heart. 551 00:36:31,232 --> 00:36:32,886 And it also gives me a lot of joy, 552 00:36:33,060 --> 00:36:37,499 but it also breaks my heart, just like a double-edged sword. 553 00:36:38,848 --> 00:36:40,502 - I think it's pretty impressive that she smiles 554 00:36:40,676 --> 00:36:44,376 first of all, because I'm not sure I'd smile all the time. 555 00:36:46,204 --> 00:36:48,249 - She approaches this disease with, like, 556 00:36:49,511 --> 00:36:53,689 such constant optimism and positivity and grace. 557 00:36:53,863 --> 00:36:56,214 - She is a determined woman. 558 00:36:56,388 --> 00:37:01,523 She is stubborn and she is going to live her life fully 559 00:37:02,785 --> 00:37:06,659 until the end and she doesn't wallow very long. 560 00:37:08,313 --> 00:37:09,792 - You know, feeding her this morning, you know, 561 00:37:09,966 --> 00:37:11,533 there's like food and stuff coming out of her mouth 562 00:37:11,707 --> 00:37:12,795 and she's laughing and she's choking at the same time. 563 00:37:12,969 --> 00:37:13,927 And it's like all this stuff that 564 00:37:14,101 --> 00:37:16,103 I would just be like over it, 565 00:37:16,277 --> 00:37:18,148 and Jamie just like rolls with it. 566 00:37:18,323 --> 00:37:21,456 So I think her strength is very unique 567 00:37:21,630 --> 00:37:24,764 and, yeah, I'd like her to know that 568 00:37:24,938 --> 00:37:27,245 I don't know if there's anybody in this world that I know 569 00:37:27,419 --> 00:37:29,682 that could face it like she does. 570 00:37:31,379 --> 00:37:32,728 - More than one time, she'd say, 571 00:37:32,902 --> 00:37:35,514 "Dan, it's going to be okay." 572 00:37:36,819 --> 00:37:41,737 And here she was with a disease that no cure for, 573 00:37:45,480 --> 00:37:47,874 and she was going to eventually die, 574 00:37:49,354 --> 00:37:51,921 telling me that it was going to be okay. 575 00:37:53,923 --> 00:37:55,534 - It's hard to put your finger on it. 576 00:37:55,708 --> 00:38:00,278 It's just that she has a peace that you can't explain it. 577 00:38:00,452 --> 00:38:02,584 She just, she's made her peace with it, and... 578 00:38:02,758 --> 00:38:05,718 - I've got this and I'm going to talk about it 579 00:38:05,892 --> 00:38:08,982 and I'm going to die from it, but I'm going to live now. 580 00:38:10,462 --> 00:38:15,554 - Yeah, Jamie smiles because she's full of love. 581 00:38:18,470 --> 00:38:19,558 She's full of hope. 582 00:38:20,689 --> 00:38:25,259 She's just Jamie, that's just who she is. 583 00:38:36,879 --> 00:38:40,927 - When my day comes, I'll be ready.