1 00:00:08,160 --> 00:00:10,319 Speaker 1: Welcome to the Good Stuff. I'm Jacob Shick and I'm 2 00:00:10,400 --> 00:00:12,680 Speaker 1: joined by my co host and wife, Ashley Shick. 3 00:00:13,440 --> 00:00:15,880 Speaker 2: Jake is a third generation combat Marine and I'm a 4 00:00:15,920 --> 00:00:19,640 Speaker 2: gold starred granddaughter. We work together to serve military veterans, 5 00:00:19,720 --> 00:00:23,440 Speaker 2: first responders, frontline healthcare workers, and their families with mental 6 00:00:23,440 --> 00:00:26,840 Speaker 2: and emotional wellness through traditional and non traditional therapy. 7 00:00:27,000 --> 00:00:28,720 Speaker 3: At One Tribe Foundation. 8 00:00:28,920 --> 00:00:31,320 Speaker 1: We believe everyone has a story to tell, not only 9 00:00:31,360 --> 00:00:33,640 Speaker 1: about the peaks, but also the valleys they've been through 10 00:00:33,680 --> 00:00:35,040 Speaker 1: to get them to where they are today. 11 00:00:35,600 --> 00:00:38,040 Speaker 2: Each week, we invite a guest to tell us their story, 12 00:00:38,240 --> 00:00:40,600 Speaker 2: to share with us the lessons they've learned that shaped 13 00:00:40,600 --> 00:00:42,600 Speaker 2: who they are and what they're doing to pay it 14 00:00:42,640 --> 00:00:43,920 Speaker 2: forward and give back. 15 00:00:44,479 --> 00:00:46,600 Speaker 1: Our mission with this show is to dig deep into 16 00:00:46,600 --> 00:00:49,040 Speaker 1: our guest's journeys so that we can celebrate the hope 17 00:00:49,040 --> 00:00:51,120 Speaker 1: and inspiration their story has to offer. 18 00:00:51,440 --> 00:00:53,320 Speaker 3: We're thrilled you're joining us again. 19 00:00:53,880 --> 00:00:55,320 Speaker 1: Welcome to the Good Stuff. 20 00:00:56,040 --> 00:00:59,280 Speaker 2: Our guest today is Maya Scott. Her story is about 21 00:00:59,320 --> 00:01:03,320 Speaker 2: young love, pregnancy, parenthood, and the unthinkable. 22 00:01:04,600 --> 00:01:08,679 Speaker 1: Maya's daughter Mariy, was diagnosed with spinal muscular atrophy at 23 00:01:08,720 --> 00:01:12,120 Speaker 1: six months old and passed away shortly after turning three. 24 00:01:12,840 --> 00:01:16,640 Speaker 1: Mary's life was full of joy, love and hardships, and 25 00:01:16,680 --> 00:01:18,839 Speaker 1: we are so lucky to have Maya on the show 26 00:01:18,880 --> 00:01:22,200 Speaker 1: today to give us a glimpse of the glory that 27 00:01:22,400 --> 00:01:23,720 Speaker 1: was and is Mariy. 28 00:01:24,720 --> 00:01:28,240 Speaker 3: After Marie passed, Maya found herself driven to help families 29 00:01:28,360 --> 00:01:30,520 Speaker 3: like hers, and today she is the director of the 30 00:01:30,560 --> 00:01:34,120 Speaker 3: Center for Diversity and Health Equity at Seattle Children's Hospital. 31 00:01:34,600 --> 00:01:38,360 Speaker 3: Her husband Jamie achieved his lifelong dream of becoming a firefighter, 32 00:01:38,520 --> 00:01:41,760 Speaker 3: serving the neighborhood he grew up in. Facing a mother 33 00:01:41,800 --> 00:01:45,160 Speaker 3: and father's worst nightmare, these two found beauty in life 34 00:01:45,200 --> 00:01:48,360 Speaker 3: through Mari's enduring spirit, which has led them to travel 35 00:01:48,360 --> 00:01:50,520 Speaker 3: the world and take care of their community. 36 00:01:51,800 --> 00:01:56,680 Speaker 1: This is a miraculous conversation about love, strength, and living 37 00:01:56,720 --> 00:01:57,720 Speaker 1: life to the fullest. 38 00:02:04,920 --> 00:02:07,520 Speaker 2: Maya Scott, we can't thank you enough for joining us 39 00:02:07,520 --> 00:02:10,160 Speaker 2: to tell us your story and the story of your 40 00:02:10,160 --> 00:02:13,160 Speaker 2: beautiful daughter, Mari. We know that you and your husband 41 00:02:13,240 --> 00:02:16,400 Speaker 2: Jamie live your lives in honor and celebration of Mari's 42 00:02:16,440 --> 00:02:19,280 Speaker 2: three beautiful years on this earth, and it is such 43 00:02:19,280 --> 00:02:21,640 Speaker 2: a privilege to have you on the show to spread 44 00:02:21,639 --> 00:02:22,280 Speaker 2: her spirit. 45 00:02:23,360 --> 00:02:26,120 Speaker 4: That's exactly why right. Every single time I have an 46 00:02:26,120 --> 00:02:31,080 Speaker 4: opportunity to talk about just the really robust and incredible 47 00:02:31,120 --> 00:02:34,160 Speaker 4: way that she lived her life, feels like a really 48 00:02:34,160 --> 00:02:36,840 Speaker 4: small ask to share that, because I think there's so 49 00:02:36,919 --> 00:02:39,760 Speaker 4: many things that people need to hear just about the 50 00:02:39,800 --> 00:02:42,320 Speaker 4: way that she taught all of us. So I'm grateful 51 00:02:42,320 --> 00:02:44,360 Speaker 4: for the opportunity to share a little bit more about 52 00:02:44,400 --> 00:02:45,400 Speaker 4: her in the space. 53 00:02:46,240 --> 00:02:50,880 Speaker 1: We're eternally grateful to you and your courage for doing this, 54 00:02:51,000 --> 00:02:55,760 Speaker 1: and so look to get us started. First things first, 55 00:02:56,639 --> 00:02:57,919 Speaker 1: how did you and Jamie meet. 56 00:03:00,080 --> 00:03:02,280 Speaker 4: We met in high school. We were high school sweethearts, 57 00:03:02,520 --> 00:03:05,280 Speaker 4: and we had health class together, which is kind of 58 00:03:05,280 --> 00:03:07,320 Speaker 4: funny if you know what you learn in health class. 59 00:03:07,360 --> 00:03:10,960 Speaker 4: And we were assigned a group project in class, and 60 00:03:11,320 --> 00:03:13,840 Speaker 4: for some reason, like he scooted his chair all the 61 00:03:13,880 --> 00:03:15,720 Speaker 4: way across the room so that he could be in 62 00:03:15,720 --> 00:03:18,560 Speaker 4: my group, which should have been a sign. And the 63 00:03:18,600 --> 00:03:21,399 Speaker 4: rest was history. We fell in love and I went 64 00:03:21,440 --> 00:03:23,600 Speaker 4: home and told my mom like after I met him, 65 00:03:24,160 --> 00:03:26,080 Speaker 4: that I met the guy I'm going to marry today, 66 00:03:26,120 --> 00:03:28,119 Speaker 4: and I was like fifteen years old, and my mom 67 00:03:28,200 --> 00:03:31,040 Speaker 4: was like sure, like everybody says that. And then at 68 00:03:31,080 --> 00:03:33,360 Speaker 4: my wedding, I got to be really smug and rude 69 00:03:33,360 --> 00:03:36,640 Speaker 4: about it because we got married. So yeah, it was great. 70 00:03:36,960 --> 00:03:40,600 Speaker 4: You're like I told you so, Yep, exactly, that's exactly 71 00:03:40,640 --> 00:03:41,280 Speaker 4: what I said. 72 00:03:41,600 --> 00:03:42,920 Speaker 3: I'm thinking back to high school. 73 00:03:43,000 --> 00:03:45,600 Speaker 2: Did he throw any really great, you know, pickup line 74 00:03:45,640 --> 00:03:47,560 Speaker 2: down or anything, or he just I mean. 75 00:03:47,480 --> 00:03:49,840 Speaker 3: Yeah, he scooted his chair all the way over to you. 76 00:03:50,120 --> 00:03:53,240 Speaker 1: Or did he just completely invade your personal. 77 00:03:52,840 --> 00:03:55,080 Speaker 4: Space a combination. 78 00:03:55,600 --> 00:03:56,120 Speaker 2: He didn't. 79 00:03:56,360 --> 00:03:59,480 Speaker 4: He wasn't like, you know, dropping pickup lines and stuff. 80 00:03:59,520 --> 00:04:02,040 Speaker 4: But after we started dating, like, he still had a 81 00:04:02,080 --> 00:04:05,000 Speaker 4: paper route. It was that deep in back in time, 82 00:04:05,400 --> 00:04:07,400 Speaker 4: and he used his paper route money to bring me 83 00:04:07,520 --> 00:04:10,880 Speaker 4: roses to school on our month anniversary every single month, 84 00:04:10,920 --> 00:04:13,160 Speaker 4: and so it wasn't a pickup line, but it was 85 00:04:13,240 --> 00:04:16,000 Speaker 4: game right. I was like, the paper route money to 86 00:04:16,080 --> 00:04:18,560 Speaker 4: buy the roses to bring to school felt like an 87 00:04:18,640 --> 00:04:20,919 Speaker 4: extreme flex when you were fifteen years old. It was 88 00:04:21,000 --> 00:04:22,599 Speaker 4: very romantic that. 89 00:04:22,880 --> 00:04:23,120 Speaker 2: Yeah. 90 00:04:23,160 --> 00:04:26,599 Speaker 1: I mean to the ladies on this, I'm thinking to myself, like, 91 00:04:27,320 --> 00:04:29,800 Speaker 1: come on, Jamie, like you're making the rest of us 92 00:04:29,839 --> 00:04:30,720 Speaker 1: look horrible. 93 00:04:31,880 --> 00:04:35,360 Speaker 2: That's amazing and okay, so high school, sweetheart, and then 94 00:04:35,480 --> 00:04:37,880 Speaker 2: you did you wound up and got hitched. 95 00:04:38,560 --> 00:04:41,719 Speaker 4: Yeah, so we got married super young. We got married 96 00:04:41,720 --> 00:04:45,120 Speaker 4: when we were twenty, and I tell people like, of course, 97 00:04:45,160 --> 00:04:47,359 Speaker 4: we have this wonderful love story, but it's also like 98 00:04:47,400 --> 00:04:49,080 Speaker 4: the dumbest thing I ever did. I don't know if 99 00:04:49,080 --> 00:04:50,960 Speaker 4: both things can be true at the same time. But 100 00:04:51,000 --> 00:04:53,720 Speaker 4: I don't recommend children to get married when they're twenty, 101 00:04:54,040 --> 00:04:56,600 Speaker 4: but here we are. Yes, we got married when we 102 00:04:56,600 --> 00:04:59,920 Speaker 4: were twenty and had a very small wedding which is 103 00:05:00,080 --> 00:05:02,600 Speaker 4: our family, and then a big reception with our massive 104 00:05:02,640 --> 00:05:05,400 Speaker 4: families back at home, and then like a month later, 105 00:05:05,440 --> 00:05:07,719 Speaker 4: we moved to Hawaii to start the rest of our lives. 106 00:05:07,720 --> 00:05:10,960 Speaker 4: And it was just a blast, I mean, to be newlyweds, 107 00:05:10,960 --> 00:05:13,800 Speaker 4: and I did my undergrad at University of Hawaii, and 108 00:05:14,600 --> 00:05:16,520 Speaker 4: I think it was just the perfect beginning, just to 109 00:05:16,560 --> 00:05:19,360 Speaker 4: get away from you know, all of the we were 110 00:05:19,440 --> 00:05:22,239 Speaker 4: kids in Seattle, and Seattle can be real small towny. 111 00:05:22,720 --> 00:05:24,520 Speaker 4: To start in a new place like Hawaii, it was 112 00:05:24,560 --> 00:05:27,080 Speaker 4: just it was magic. That was the best decision we 113 00:05:27,120 --> 00:05:27,640 Speaker 4: ever made. 114 00:05:28,600 --> 00:05:30,840 Speaker 1: Had you been to Hawaii before. 115 00:05:31,440 --> 00:05:34,760 Speaker 4: You know, my grandma was a genius and when she retired, 116 00:05:34,880 --> 00:05:40,120 Speaker 4: she lived in the Seattle winters in Honolulu and lived 117 00:05:40,240 --> 00:05:43,160 Speaker 4: like spring and summer here, so they call them snowbirds. 118 00:05:43,240 --> 00:05:45,840 Speaker 4: And so I had gone over back and forth when 119 00:05:45,880 --> 00:05:48,160 Speaker 4: I was like a little kid to see my grandma. 120 00:05:48,200 --> 00:05:50,400 Speaker 4: We would spend Christmas there every once in a while. 121 00:05:50,680 --> 00:05:52,960 Speaker 4: And there's a great deal, like we paid in state 122 00:05:52,960 --> 00:05:55,039 Speaker 4: tuition if you live on the West Coast. And so 123 00:05:55,279 --> 00:05:58,200 Speaker 4: I was not a super smart student back in the day. 124 00:05:58,240 --> 00:06:00,640 Speaker 4: I just didn't care that much about school. I guess 125 00:06:00,640 --> 00:06:03,200 Speaker 4: I was too busy, you know, being in love with 126 00:06:03,240 --> 00:06:06,400 Speaker 4: my high school boyfriend or something. But I could like 127 00:06:06,480 --> 00:06:09,000 Speaker 4: move to eastern Washington and go to college or move 128 00:06:09,080 --> 00:06:13,040 Speaker 4: to Hawaii, and so I chose Hawaii. So I'm a, yeah, 129 00:06:13,200 --> 00:06:15,520 Speaker 4: I'm a I love being near the water's brilliant. 130 00:06:16,080 --> 00:06:19,080 Speaker 1: You're gonna have to be our tour guide. Yeah, that's 131 00:06:19,080 --> 00:06:20,119 Speaker 1: our fiftieth state. 132 00:06:20,440 --> 00:06:22,680 Speaker 2: We know you love to travel, and we love to travel, 133 00:06:22,760 --> 00:06:24,279 Speaker 2: and we've done a lot of it for work, but 134 00:06:24,320 --> 00:06:25,520 Speaker 2: we do a lot of it for pleasure. 135 00:06:25,600 --> 00:06:28,719 Speaker 3: And I've been to forty nine of the fifty states. 136 00:06:28,800 --> 00:06:31,720 Speaker 2: Jake's been to forty eight of the fifty states, and 137 00:06:32,000 --> 00:06:34,600 Speaker 2: he still lacks Alaska, and neither of us have been 138 00:06:34,600 --> 00:06:35,160 Speaker 2: to Hawaii. 139 00:06:35,200 --> 00:06:37,440 Speaker 3: So we're that's going to be our fiftieth. 140 00:06:37,640 --> 00:06:40,719 Speaker 4: Oh my gosh, okay, way to like bring it home though, 141 00:06:41,440 --> 00:06:44,839 Speaker 4: like right, I mean the well done, Yes this is 142 00:06:44,920 --> 00:06:46,760 Speaker 4: I know this is not that podcast, but I can. 143 00:06:46,839 --> 00:06:50,120 Speaker 4: I'll send you a whole, like aggressively long list of 144 00:06:50,160 --> 00:06:51,400 Speaker 4: things to do in places to go. 145 00:06:51,600 --> 00:06:54,080 Speaker 2: It's beautifect Well, we're just going to talk you into 146 00:06:54,120 --> 00:06:54,760 Speaker 2: coming with us. 147 00:06:54,960 --> 00:06:57,520 Speaker 4: Yeah, I don't need to be talked into it. I don't. 148 00:06:57,640 --> 00:06:58,800 Speaker 4: I don't listen in. 149 00:06:59,080 --> 00:07:02,000 Speaker 1: So it's done. It's done. You just got to figure 150 00:07:02,000 --> 00:07:03,719 Speaker 1: out when we're going to squeeze a laskin. 151 00:07:05,080 --> 00:07:08,679 Speaker 2: So married at twenty and then when did y'all decide 152 00:07:08,720 --> 00:07:09,520 Speaker 2: to grow your family. 153 00:07:10,840 --> 00:07:13,520 Speaker 4: I think we were twenty five when we decided to 154 00:07:13,600 --> 00:07:16,960 Speaker 4: have a baby. And again, right, we're kind of West 155 00:07:16,960 --> 00:07:19,560 Speaker 4: Coast folks, and that feels so young now that I 156 00:07:19,600 --> 00:07:22,160 Speaker 4: think about it, But I think because we've been together 157 00:07:22,200 --> 00:07:26,400 Speaker 4: for so long, it just didn't feel it didn't feel wilder, 158 00:07:26,800 --> 00:07:30,040 Speaker 4: you know, silly to have a kid. And so we were, 159 00:07:30,160 --> 00:07:32,440 Speaker 4: you know, I think, as prepared as you can be, 160 00:07:32,560 --> 00:07:35,040 Speaker 4: but like, you know, kind of poor. We were living 161 00:07:35,120 --> 00:07:38,320 Speaker 4: in the Bay Area, just kind of living the lives 162 00:07:38,320 --> 00:07:41,600 Speaker 4: of like people in our mid twenties in Oakland, California, 163 00:07:41,640 --> 00:07:44,760 Speaker 4: and just decided to have a baby, and I had 164 00:07:44,800 --> 00:07:47,640 Speaker 4: the best pregnancy and all these friends that didn't have 165 00:07:47,680 --> 00:07:50,920 Speaker 4: any kids, and so we just like I had this 166 00:07:51,000 --> 00:07:54,120 Speaker 4: whole crew of folks that just went on food adventures 167 00:07:54,120 --> 00:07:55,960 Speaker 4: with me and ate all the fun things that I 168 00:07:56,000 --> 00:07:59,080 Speaker 4: wanted to eat, and it wasn't really I felt so 169 00:07:59,360 --> 00:08:03,000 Speaker 4: energized and excited when we were preparing for Mari to come. 170 00:08:03,080 --> 00:08:06,120 Speaker 4: It was like such a special time waiting to meet her. 171 00:08:06,480 --> 00:08:09,120 Speaker 4: And so I remember it's all intertwined in, you know, 172 00:08:09,200 --> 00:08:12,200 Speaker 4: being twenty five, living in the Bay Area, having these 173 00:08:12,240 --> 00:08:15,440 Speaker 4: fantastic friends, just kind of waiting for this little person 174 00:08:15,480 --> 00:08:16,480 Speaker 4: to come join our crew. 175 00:08:16,840 --> 00:08:19,040 Speaker 2: And it's so funny because parents always say that, oh, 176 00:08:19,040 --> 00:08:21,440 Speaker 2: we're waiting for the right time to have It's never 177 00:08:21,520 --> 00:08:22,480 Speaker 2: the right time, right. 178 00:08:22,720 --> 00:08:24,800 Speaker 3: What were y'all doing professionally at that time? 179 00:08:25,640 --> 00:08:28,320 Speaker 4: So I had a really cool job at the time. 180 00:08:28,560 --> 00:08:33,600 Speaker 4: I was working for a small nonprofit adoption agency, which 181 00:08:33,679 --> 00:08:36,240 Speaker 4: was like my first big kid job out of college. 182 00:08:36,400 --> 00:08:40,800 Speaker 4: And I got to help look for families adoptive families 183 00:08:40,800 --> 00:08:43,720 Speaker 4: for kids in foster care for the state of California. 184 00:08:43,960 --> 00:08:46,680 Speaker 4: And I've adopted from foster care, and so it was 185 00:08:46,720 --> 00:08:51,600 Speaker 4: super meaningful and full circle. And Jamie was working for 186 00:08:51,880 --> 00:08:54,160 Speaker 4: like the Duty Free company, so that was his job 187 00:08:54,280 --> 00:08:58,800 Speaker 4: in Hawaii, and transferred to San Francisco and was like 188 00:08:58,840 --> 00:09:01,720 Speaker 4: a you know, liquor and wine manager, and you know, 189 00:09:01,800 --> 00:09:04,319 Speaker 4: they weren't like our forever jobs, but they were good enough. 190 00:09:04,400 --> 00:09:06,360 Speaker 4: And so we were, you know, just kind of chugging 191 00:09:06,400 --> 00:09:08,880 Speaker 4: along with our jobs and living our best life in 192 00:09:08,880 --> 00:09:11,200 Speaker 4: the Bay Area. I can't stress that enough fun place 193 00:09:11,240 --> 00:09:12,240 Speaker 4: to be when you're young. 194 00:09:12,480 --> 00:09:16,079 Speaker 3: Yeah, no kidding, or when you're old, or pretty much any. 195 00:09:16,000 --> 00:09:18,199 Speaker 4: Time anytime, yeah, anytime. 196 00:09:18,480 --> 00:09:22,040 Speaker 2: Yeah, So this beautiful bundle of joy comes along. 197 00:09:22,559 --> 00:09:23,520 Speaker 3: Tell us about Mari. 198 00:09:24,440 --> 00:09:27,080 Speaker 4: Oh my gosh. She came into the world like with 199 00:09:27,280 --> 00:09:31,280 Speaker 4: such purpose. And you hear when you're pregnant that your 200 00:09:31,360 --> 00:09:33,679 Speaker 4: kids are just going to be who they are. You 201 00:09:33,720 --> 00:09:36,880 Speaker 4: don't really have much control. She came into the world 202 00:09:36,920 --> 00:09:40,320 Speaker 4: with clarity and purpose, even as like a newborn. We 203 00:09:40,360 --> 00:09:42,880 Speaker 4: remember looking at her and being like she's like staring 204 00:09:42,960 --> 00:09:46,840 Speaker 4: us down, like she was just super present in the world, 205 00:09:47,000 --> 00:09:50,160 Speaker 4: and it was so exciting to just get to know her. 206 00:09:50,320 --> 00:09:53,200 Speaker 4: So she came on her own time, right when she 207 00:09:53,360 --> 00:09:55,920 Speaker 4: wanted to. And you know, I stayed at home for 208 00:09:56,000 --> 00:09:58,760 Speaker 4: like twenty two hours and had labored at home, and 209 00:09:58,800 --> 00:10:02,439 Speaker 4: then she came two hours later and she just unfolded 210 00:10:02,480 --> 00:10:04,599 Speaker 4: like a flower and just kind of looked at everybody, 211 00:10:05,000 --> 00:10:07,800 Speaker 4: And I remember that so clearly, just her dark eyes 212 00:10:07,960 --> 00:10:11,240 Speaker 4: just kind of checking us out. I tell this funny 213 00:10:11,240 --> 00:10:16,160 Speaker 4: story because she loved to hear about being born later on, 214 00:10:16,400 --> 00:10:19,120 Speaker 4: so she was super hyped to know how painful it 215 00:10:19,320 --> 00:10:21,679 Speaker 4: was and how like she was, you know, like she 216 00:10:21,679 --> 00:10:24,520 Speaker 4: she wanted me to tell her this story all the time. 217 00:10:24,600 --> 00:10:28,040 Speaker 4: But all of our friends came to the hospital and 218 00:10:28,080 --> 00:10:30,200 Speaker 4: were waiting, and I didn't know it either, And so 219 00:10:30,280 --> 00:10:32,640 Speaker 4: when she was born, there was all these folks that 220 00:10:32,640 --> 00:10:34,680 Speaker 4: were waiting to meet her, and so one after the 221 00:10:34,720 --> 00:10:36,800 Speaker 4: other they came in and helped her and snuggled her. 222 00:10:36,880 --> 00:10:39,480 Speaker 4: And later on in life, when she learned about like 223 00:10:39,520 --> 00:10:42,720 Speaker 4: the Christmas story and like Baby Jesus, she learned about 224 00:10:42,760 --> 00:10:44,880 Speaker 4: it and she said, oh, Baby Jesus was just like me. 225 00:10:45,080 --> 00:10:48,360 Speaker 4: Everybody was waiting to meet Baby Jesus suit just like me. 226 00:10:48,520 --> 00:10:51,000 Speaker 4: And I was like, like, you might have it like 227 00:10:51,080 --> 00:10:54,520 Speaker 4: a little bit backwards, but you know, that's one interpretation 228 00:10:54,600 --> 00:10:57,120 Speaker 4: of the story. But she just was captivating from the 229 00:10:57,160 --> 00:10:59,920 Speaker 4: time that she arrived and I know I'm biased as 230 00:11:00,080 --> 00:11:02,480 Speaker 4: her parent, but she just had a special energy. 231 00:11:06,800 --> 00:11:09,760 Speaker 1: I'm curious to know the name Maury, where did that 232 00:11:09,800 --> 00:11:10,319 Speaker 1: come from? 233 00:11:11,120 --> 00:11:14,679 Speaker 4: So her full name is Marielle, and we called her 234 00:11:14,720 --> 00:11:18,600 Speaker 4: mari for short. My mom's name is Mary Ellen, and 235 00:11:18,640 --> 00:11:21,520 Speaker 4: so it's kind of an interpretation of a few family names. 236 00:11:21,720 --> 00:11:23,800 Speaker 4: But she liked to be called Mariy for short, and 237 00:11:23,880 --> 00:11:26,160 Speaker 4: we nicknamed her that, and then she kind of embraced 238 00:11:26,200 --> 00:11:28,280 Speaker 4: it when she was able to tell people what she 239 00:11:28,320 --> 00:11:30,480 Speaker 4: wanted to be called, which she wasn't shy about. 240 00:11:31,640 --> 00:11:34,480 Speaker 2: She sounds like, I mean, not just a bundle of joy, 241 00:11:34,520 --> 00:11:37,120 Speaker 2: but just like you said, she came in with clarity 242 00:11:37,160 --> 00:11:39,559 Speaker 2: and purpose, just such a presence. 243 00:11:40,320 --> 00:11:44,240 Speaker 4: That's yeahful. She certainly made her presence known even before 244 00:11:44,280 --> 00:11:46,160 Speaker 4: she could talk. She just had a way of kind 245 00:11:46,160 --> 00:11:49,880 Speaker 4: of peering into people's eyes and demanding their attention, even 246 00:11:49,880 --> 00:11:51,679 Speaker 4: when she was just a tiny little thing. 247 00:11:52,480 --> 00:11:55,480 Speaker 3: So how did she develop as she was growing older? 248 00:11:56,480 --> 00:12:00,560 Speaker 4: She was ahead of all of her milestones for a while. 249 00:12:00,880 --> 00:12:04,080 Speaker 4: And you know, you like pretend like that's not exciting, 250 00:12:04,120 --> 00:12:06,760 Speaker 4: but it is. She rolled over really early and we 251 00:12:06,760 --> 00:12:10,720 Speaker 4: were kind of proud of that. And I remember noticing 252 00:12:10,760 --> 00:12:15,240 Speaker 4: one day that she couldn't roll over anymore. She was trying, 253 00:12:15,440 --> 00:12:18,439 Speaker 4: but she couldn't. And you know, I'm a little bit 254 00:12:18,440 --> 00:12:21,280 Speaker 4: of a like a nervous nelly or there's you know, 255 00:12:21,360 --> 00:12:24,120 Speaker 4: a million ways to describe it. I remember just noting 256 00:12:24,160 --> 00:12:26,160 Speaker 4: that and being really freaked out by that, and so 257 00:12:26,400 --> 00:12:29,600 Speaker 4: taking her to her pediatrician, who I think tried not 258 00:12:29,640 --> 00:12:31,959 Speaker 4: to freak us out but wanted to do for their 259 00:12:31,960 --> 00:12:34,400 Speaker 4: workup and have her be seen by a physical therapists. 260 00:12:34,400 --> 00:12:36,960 Speaker 4: It could be a range of like absolutely nothing to 261 00:12:37,040 --> 00:12:40,920 Speaker 4: something horrifying, and so we you know, started on kind 262 00:12:40,960 --> 00:12:44,920 Speaker 4: of a medical process totally unexpectedly, just when we noticed 263 00:12:44,920 --> 00:12:46,920 Speaker 4: that she couldn't do the things that she wanted to 264 00:12:46,960 --> 00:12:50,160 Speaker 4: do anymore. I think I was a little naive even 265 00:12:50,240 --> 00:12:53,160 Speaker 4: going into that, of how scary her future could become. 266 00:12:53,920 --> 00:12:56,640 Speaker 2: I think that's completely natural to be the nervous nelly, 267 00:12:56,720 --> 00:12:58,559 Speaker 2: and especially first time mom. 268 00:12:58,760 --> 00:13:02,480 Speaker 1: From the mall perspective, I think that's a first time 269 00:13:02,559 --> 00:13:05,800 Speaker 1: parent thing. You know. I think you're just like, like 270 00:13:05,880 --> 00:13:08,880 Speaker 1: I told you, like I would fall asleep sleeping at 271 00:13:08,880 --> 00:13:12,000 Speaker 1: the end of the bed when Jackson was you know, 272 00:13:12,559 --> 00:13:15,839 Speaker 1: because he was in the crip thing right at the 273 00:13:15,920 --> 00:13:17,840 Speaker 1: end of the bed. And I would just like just 274 00:13:17,920 --> 00:13:20,000 Speaker 1: watch them breathe and be at the end of the 275 00:13:20,040 --> 00:13:23,199 Speaker 1: bed and then I'd wake up like that, Yeah, I 276 00:13:23,200 --> 00:13:26,679 Speaker 1: think it's normal. There are thing they're ours, you know. 277 00:13:27,000 --> 00:13:29,600 Speaker 1: Just like you said, it's never a perfect time. You 278 00:13:29,760 --> 00:13:32,120 Speaker 1: think you could do everything in the world and think 279 00:13:32,160 --> 00:13:35,480 Speaker 1: that you're like okay, I'm ready, so ready, and then 280 00:13:35,559 --> 00:13:39,319 Speaker 1: that little human being blesses the world and you're like, 281 00:13:39,600 --> 00:13:40,880 Speaker 1: oh my god. 282 00:13:41,679 --> 00:13:44,880 Speaker 4: Yep, yep, everyone's the best parent in the world, like 283 00:13:44,920 --> 00:13:48,000 Speaker 4: before they have children. It's this is a really interesting vibe, 284 00:13:48,040 --> 00:13:50,560 Speaker 4: like you know all, you have, all the answers, you 285 00:13:50,640 --> 00:13:53,160 Speaker 4: know everything, and then you have a kid and you're like, okay, 286 00:13:53,320 --> 00:13:55,520 Speaker 4: I am I am humbled. I know nothing at all. 287 00:13:55,840 --> 00:13:57,079 Speaker 1: Yeah, no doubt about it. 288 00:13:57,240 --> 00:14:00,960 Speaker 2: Throw all the books, all the guides away, let me 289 00:14:01,040 --> 00:14:05,000 Speaker 2: just do this thing. So when the docs started doing 290 00:14:05,800 --> 00:14:08,080 Speaker 2: the research and started running some of the tests, what 291 00:14:08,160 --> 00:14:08,840 Speaker 2: did you discover? 292 00:14:10,280 --> 00:14:13,560 Speaker 4: So we were called into an appointment and met with 293 00:14:13,600 --> 00:14:16,480 Speaker 4: her doctors who told us that she was diagnosed with 294 00:14:17,080 --> 00:14:21,720 Speaker 4: a disease called spinal muscular atrophy and there's kind of 295 00:14:21,760 --> 00:14:24,960 Speaker 4: a range of severity and it's one of those things 296 00:14:24,960 --> 00:14:28,080 Speaker 4: that catching it earlier is the opposite of good. It's terrible. 297 00:14:28,480 --> 00:14:31,760 Speaker 4: The earlier you find it, the more severe it is. 298 00:14:31,840 --> 00:14:36,239 Speaker 4: It's when the symptoms present. I remember bits and pieces 299 00:14:36,320 --> 00:14:40,160 Speaker 4: of the conversation, not that much, just because you know, 300 00:14:40,240 --> 00:14:43,560 Speaker 4: everything kind of goes dark when you're confronted with something horrible. 301 00:14:44,200 --> 00:14:47,440 Speaker 4: I remember him telling us like, there's nothing you can do, 302 00:14:47,680 --> 00:14:50,200 Speaker 4: like take her home and love her because she's not 303 00:14:50,320 --> 00:14:52,280 Speaker 4: going to live a long life. We lived in the 304 00:14:52,280 --> 00:14:54,920 Speaker 4: Bay Area, we didn't have a car, and I remember like, 305 00:14:55,120 --> 00:14:57,280 Speaker 4: instead of taking the bus back to our apartment like 306 00:14:57,320 --> 00:14:59,640 Speaker 4: we always did, my husband and I we walked all 307 00:14:59,640 --> 00:15:02,680 Speaker 4: the way home, just like, you know, kind of breathless, 308 00:15:02,840 --> 00:15:06,800 Speaker 4: because it wasn't only that she had this disease that 309 00:15:06,800 --> 00:15:10,000 Speaker 4: we didn't know anything about, but it was that there 310 00:15:10,080 --> 00:15:11,840 Speaker 4: was no hope that was kind of put in front 311 00:15:11,840 --> 00:15:13,760 Speaker 4: of us when we learned that there wasn't a thing 312 00:15:13,800 --> 00:15:16,320 Speaker 4: that we could do or a medicine that we could take. 313 00:15:16,360 --> 00:15:19,320 Speaker 4: It was just this is going to be awful. She's 314 00:15:19,360 --> 00:15:21,920 Speaker 4: gonna die. There's nothing we can do about it. It 315 00:15:22,040 --> 00:15:24,600 Speaker 4: just took my breath away and it didn't make sense 316 00:15:24,760 --> 00:15:28,200 Speaker 4: because besides not being able to roll over anymore, she 317 00:15:28,320 --> 00:15:31,240 Speaker 4: wasn't sick right. There wasn't like an illness in front 318 00:15:31,240 --> 00:15:33,720 Speaker 4: of us. So she was just this like happy little 319 00:15:33,760 --> 00:15:35,840 Speaker 4: five and a half or six month old baby doing 320 00:15:35,880 --> 00:15:38,480 Speaker 4: what five and a half and six month old babies do. 321 00:15:39,240 --> 00:15:42,880 Speaker 4: There was just this really intense dichotomy between like what 322 00:15:43,000 --> 00:15:45,440 Speaker 4: we heard and what we were looking at, and I 323 00:15:46,080 --> 00:15:48,280 Speaker 4: just it's hard to make sense of those two realities 324 00:15:48,320 --> 00:15:51,200 Speaker 4: at the same time, because you know, kids don't stop, right, 325 00:15:51,200 --> 00:15:53,880 Speaker 4: You got to like get up and do the thing 326 00:15:54,000 --> 00:15:56,520 Speaker 4: the next day. And so it just didn't match up 327 00:15:56,560 --> 00:15:59,360 Speaker 4: to where we were emotionally, which I think in reflection 328 00:15:59,520 --> 00:16:01,840 Speaker 4: was a good thing maybe, but I think it made 329 00:16:01,880 --> 00:16:03,920 Speaker 4: it hard in real time for sure. 330 00:16:04,840 --> 00:16:06,800 Speaker 2: I Mean, I'm sitting here thinking like, how do you 331 00:16:06,880 --> 00:16:09,840 Speaker 2: get this devastating news that you've just received and then 332 00:16:09,880 --> 00:16:13,240 Speaker 2: you have to go on parenting right, acting like nothing's wrong, 333 00:16:13,400 --> 00:16:14,840 Speaker 2: acting like everything's fine. 334 00:16:15,560 --> 00:16:17,520 Speaker 3: How did you cope? 335 00:16:17,760 --> 00:16:22,040 Speaker 4: I'm lucky to be surrounded by a lot of incredible people, 336 00:16:22,280 --> 00:16:26,360 Speaker 4: and so I remember talking to my mom and I 337 00:16:26,400 --> 00:16:29,880 Speaker 4: remember my friends coming over. I think she forced us 338 00:16:29,880 --> 00:16:34,320 Speaker 4: to cope. She was just like the embodiment of joy, 339 00:16:34,680 --> 00:16:39,280 Speaker 4: and so I just in reflection, had this like pit 340 00:16:39,440 --> 00:16:42,440 Speaker 4: in my stomach for the longest time. But I think 341 00:16:42,480 --> 00:16:44,120 Speaker 4: there was a part of me that just tried to 342 00:16:44,160 --> 00:16:47,600 Speaker 4: set aside all the things that were to come, because 343 00:16:48,160 --> 00:16:49,640 Speaker 4: you know, I had to get up, my husband had 344 00:16:49,640 --> 00:16:51,840 Speaker 4: to go to work. I had a baby that wanted 345 00:16:51,840 --> 00:16:55,440 Speaker 4: to engage, and I think demanded that of us. And 346 00:16:55,520 --> 00:16:58,240 Speaker 4: so we really just tried to do the things that 347 00:16:58,280 --> 00:17:00,360 Speaker 4: we were supposed to do, right, take her to story 348 00:17:00,400 --> 00:17:03,200 Speaker 4: time and you know, get outside and read books. And 349 00:17:03,680 --> 00:17:06,680 Speaker 4: I think early on got to a place where we 350 00:17:06,680 --> 00:17:08,679 Speaker 4: were really going to soak in our time with her, 351 00:17:08,760 --> 00:17:11,960 Speaker 4: right that was the easiest thing to come to, was, well, 352 00:17:12,040 --> 00:17:16,040 Speaker 4: if she's gonna die, then we have to love her extra, 353 00:17:16,240 --> 00:17:19,320 Speaker 4: we have to do all the things extra. And so 354 00:17:19,600 --> 00:17:22,760 Speaker 4: we really did that and started celebrating her birthday every 355 00:17:22,800 --> 00:17:25,800 Speaker 4: month instead of every year, just because we wanted to 356 00:17:25,840 --> 00:17:29,639 Speaker 4: have celebrations, right, and she deserved to be celebrated, And 357 00:17:29,720 --> 00:17:32,280 Speaker 4: so we just decided to start doing those things and 358 00:17:32,320 --> 00:17:35,040 Speaker 4: do them all the time, because I think that was 359 00:17:35,080 --> 00:17:37,640 Speaker 4: the only thing that we could control, right, was how 360 00:17:37,680 --> 00:17:40,919 Speaker 4: we lived with her. Everything else was just happening, and 361 00:17:41,000 --> 00:17:43,520 Speaker 4: so we're like, damn it, if everything else is happening 362 00:17:43,520 --> 00:17:46,000 Speaker 4: and we have no control over that, then we're going 363 00:17:46,080 --> 00:17:49,280 Speaker 4: to have some fun right now. And it wasn't easy, right, 364 00:17:49,320 --> 00:17:51,200 Speaker 4: it wasn't perfect all the time, but it was so 365 00:17:51,359 --> 00:17:52,400 Speaker 4: really a mission. 366 00:17:52,960 --> 00:17:57,360 Speaker 1: You and Jamie clearly decided, Hey, let's grab a hold 367 00:17:57,400 --> 00:18:03,240 Speaker 1: of our grit grace. We got to keep putting one 368 00:18:03,240 --> 00:18:06,639 Speaker 1: foot in front of the other because this beautiful, precious 369 00:18:07,280 --> 00:18:13,880 Speaker 1: angel doesn't know about this devastating news. And I think 370 00:18:13,960 --> 00:18:18,160 Speaker 1: the doctor what sound advice? Go love her all the way, 371 00:18:18,440 --> 00:18:23,040 Speaker 1: you know, And then you guys knowing, hey, what can 372 00:18:23,080 --> 00:18:25,479 Speaker 1: we do? Because how much do all of us We 373 00:18:25,520 --> 00:18:28,560 Speaker 1: were just talking about that this week. We forget to 374 00:18:28,680 --> 00:18:32,520 Speaker 1: celebrate the small things like we forget, maybe not even 375 00:18:32,560 --> 00:18:34,600 Speaker 1: so much forget, but it's like, eh, it's just a 376 00:18:34,640 --> 00:18:36,520 Speaker 1: small thing, like we didn't win the lottery, so it's 377 00:18:36,520 --> 00:18:39,080 Speaker 1: not the big of a deal, or like you know 378 00:18:39,080 --> 00:18:42,640 Speaker 1: what I mean. And you guys were intentional about it. 379 00:18:43,080 --> 00:18:46,640 Speaker 1: That had to play a role in having the internal 380 00:18:46,640 --> 00:18:50,240 Speaker 1: fortitude to keep going next step. And I yeah, there's 381 00:18:50,280 --> 00:18:53,239 Speaker 1: no manual on how to do that, Like there's no 382 00:18:53,480 --> 00:18:58,159 Speaker 1: class you can take to give you the perseverance of 383 00:18:58,240 --> 00:19:01,920 Speaker 1: perspective you need to do the loving the best you can. 384 00:19:02,400 --> 00:19:05,240 Speaker 1: I think it was instinctual and you just you guys 385 00:19:05,359 --> 00:19:11,440 Speaker 1: leaned in and just ran with it. And clearly Mari 386 00:19:11,680 --> 00:19:12,880 Speaker 1: had no shortage of love. 387 00:19:13,640 --> 00:19:17,960 Speaker 4: Clearly, Yeah, we talk about that right, how her life 388 00:19:18,119 --> 00:19:21,040 Speaker 4: was hard in so many ways, and but that her 389 00:19:21,359 --> 00:19:25,400 Speaker 4: experience was to be surrounded by like a huge community 390 00:19:25,440 --> 00:19:27,800 Speaker 4: of people that loved her. Like she never met a stranger. 391 00:19:27,960 --> 00:19:30,040 Speaker 4: You know. We'd be like on the bus in San 392 00:19:30,040 --> 00:19:32,680 Speaker 4: Francisco and there'd be some really pissed off looking guy 393 00:19:32,760 --> 00:19:35,720 Speaker 4: and she'd just be like smiling at him, you know, 394 00:19:36,080 --> 00:19:39,080 Speaker 4: like like on the bus and I just say, sir, 395 00:19:39,280 --> 00:19:41,679 Speaker 4: I'm sorry. She's gonna keep doing this until just like 396 00:19:41,960 --> 00:19:45,240 Speaker 4: give her a little something and show me you alone. 397 00:19:45,440 --> 00:19:48,240 Speaker 4: But she just really she had a way of kind 398 00:19:48,240 --> 00:19:51,640 Speaker 4: of demanding and captivating folks. And I think the thing 399 00:19:51,680 --> 00:19:54,399 Speaker 4: that happened that, you know, along the way, was she 400 00:19:54,520 --> 00:19:58,320 Speaker 4: developed the language skills very early. And in reflection, you know, 401 00:19:58,320 --> 00:20:00,439 Speaker 4: we you kind of make sense of things, you know, 402 00:20:00,520 --> 00:20:02,520 Speaker 4: as you look back, it's like she sure had a 403 00:20:02,560 --> 00:20:04,679 Speaker 4: lot of things to say, and so she found the 404 00:20:04,720 --> 00:20:08,679 Speaker 4: ability to communicate so early, and so it feels like 405 00:20:08,720 --> 00:20:10,919 Speaker 4: we knew her for a really long time because she 406 00:20:10,960 --> 00:20:13,440 Speaker 4: started speaking when she was like twelve and a half months, 407 00:20:13,760 --> 00:20:17,080 Speaker 4: Oh wow. And then you know, very soon after started 408 00:20:17,119 --> 00:20:19,800 Speaker 4: like telling people what to do, and you know, and 409 00:20:20,000 --> 00:20:22,960 Speaker 4: I love that about her, and so I think those 410 00:20:23,000 --> 00:20:26,320 Speaker 4: things all happened, and you couldn't help but love her 411 00:20:26,359 --> 00:20:30,200 Speaker 4: little spirit just because she had this way of forcing 412 00:20:30,200 --> 00:20:33,640 Speaker 4: you to even when things were hard. I really give 413 00:20:33,640 --> 00:20:35,600 Speaker 4: all the credit to her. I feel like I learned 414 00:20:35,640 --> 00:20:39,159 Speaker 4: how to navigate this from her, which feels like a 415 00:20:39,240 --> 00:20:41,080 Speaker 4: lot of pressure to put on a baby, but the 416 00:20:41,119 --> 00:20:44,240 Speaker 4: way that she you know, she started her day and 417 00:20:44,280 --> 00:20:47,040 Speaker 4: she forced us to get up and laugh and entertain her. 418 00:20:47,200 --> 00:20:49,280 Speaker 4: And so even the days where I feel like we 419 00:20:49,359 --> 00:20:52,080 Speaker 4: wanted to just hide under the covers, right, that wasn't 420 00:20:52,119 --> 00:20:54,520 Speaker 4: her agenda for the day. And so we kind of 421 00:20:54,600 --> 00:20:57,040 Speaker 4: learned how to live in those dual realities, I think, 422 00:20:57,280 --> 00:20:59,840 Speaker 4: super early, and it was an incredible gift that she 423 00:21:00,040 --> 00:21:00,440 Speaker 4: gave us. 424 00:21:00,680 --> 00:21:04,000 Speaker 2: Was absolutely What did the next few years look like? 425 00:21:04,040 --> 00:21:07,040 Speaker 2: Were their doctor's appointments, were their hospital visits. 426 00:21:07,480 --> 00:21:11,800 Speaker 4: At the time, there wasn't a treatment, and like any parent, 427 00:21:12,119 --> 00:21:15,160 Speaker 4: I didn't believe them. So we went to multiple hospitals 428 00:21:15,200 --> 00:21:18,919 Speaker 4: and saw all the specialists and the answers you know, 429 00:21:19,000 --> 00:21:23,080 Speaker 4: really were clear with the disease, it's you lose muscle function, 430 00:21:23,359 --> 00:21:26,720 Speaker 4: and so it wasn't kind of this rapid thing that happened. 431 00:21:26,760 --> 00:21:29,399 Speaker 4: But you know, when she got a cold, the cold 432 00:21:29,920 --> 00:21:32,600 Speaker 4: just was worse for her. So her first cold turned 433 00:21:32,640 --> 00:21:35,280 Speaker 4: into a pneumonia, and then after that her next cold, 434 00:21:35,440 --> 00:21:38,200 Speaker 4: her lungs collapsed and she was in the ICU. Because 435 00:21:38,640 --> 00:21:42,760 Speaker 4: people look at a kid that can't walk or whatever, 436 00:21:42,840 --> 00:21:45,360 Speaker 4: and they focus on that because that's important to us. 437 00:21:45,400 --> 00:21:48,640 Speaker 4: But you use muscles to like cough and to swallow, 438 00:21:48,880 --> 00:21:52,800 Speaker 4: and they're more important for those things. And so she 439 00:21:52,960 --> 00:21:57,600 Speaker 4: got sicker when she got sick, and they started getting 440 00:21:57,600 --> 00:22:00,640 Speaker 4: closer together. The first time she had a like I said, 441 00:22:00,640 --> 00:22:02,480 Speaker 4: it was aneumonia, but we could stay at home. And 442 00:22:02,520 --> 00:22:04,280 Speaker 4: then she was in the hospital, and then it was 443 00:22:04,320 --> 00:22:07,199 Speaker 4: the ICU, and then it was the ICU for a 444 00:22:07,200 --> 00:22:11,359 Speaker 4: couple of weeks. And in the beginning it was hard, 445 00:22:11,880 --> 00:22:14,280 Speaker 4: but it felt like these kind of sporadic things that 446 00:22:14,280 --> 00:22:18,639 Speaker 4: were happening. But eventually they started getting closer and closer together. 447 00:22:19,040 --> 00:22:21,080 Speaker 4: And so when she was eighteen months, it was right 448 00:22:21,119 --> 00:22:24,560 Speaker 4: after she had a feeding to put in, we relocated 449 00:22:24,640 --> 00:22:28,280 Speaker 4: back to Seattle, just because despite our fabulous life in 450 00:22:28,320 --> 00:22:30,880 Speaker 4: the Bay Area. We just needed to be with family, 451 00:22:31,240 --> 00:22:34,359 Speaker 4: and so we moved into a duplex next door to 452 00:22:34,400 --> 00:22:37,560 Speaker 4: my parents so that we could have extra support. And 453 00:22:37,600 --> 00:22:39,760 Speaker 4: so that was a lifeline, I think for all of 454 00:22:39,840 --> 00:22:42,840 Speaker 4: us to have Grandma and Grandpa next door. And that 455 00:22:43,000 --> 00:22:45,320 Speaker 4: was just like her safe haven. So we didn't allow 456 00:22:45,320 --> 00:22:48,480 Speaker 4: any medical equipment, nothing was allowed at Grandma's house, just 457 00:22:48,520 --> 00:22:51,240 Speaker 4: so that she could have one place in the world 458 00:22:51,359 --> 00:22:55,600 Speaker 4: that was hers. But the illnesses became frequent, and her 459 00:22:55,600 --> 00:22:58,639 Speaker 4: ability to really bounce back to one hundred, you know, 460 00:22:58,760 --> 00:23:02,639 Speaker 4: I think lessened over time. It just kept getting closer 461 00:23:02,640 --> 00:23:04,320 Speaker 4: and closer together and worse and worse. 462 00:23:05,080 --> 00:23:07,199 Speaker 2: Oh and as a child, I mean, as such a 463 00:23:07,240 --> 00:23:10,320 Speaker 2: young child, the hospital visits like I hate going to 464 00:23:10,359 --> 00:23:13,200 Speaker 2: the dentist, you know, for years of having cavities and 465 00:23:13,240 --> 00:23:16,040 Speaker 2: stuff like, I can't imagine for a baby to have 466 00:23:16,119 --> 00:23:18,560 Speaker 2: to go into the hospital. Did she react at all 467 00:23:18,600 --> 00:23:20,280 Speaker 2: when you had to go on those trips. 468 00:23:20,840 --> 00:23:22,679 Speaker 4: Yeah, you know, I think that was one of the 469 00:23:22,720 --> 00:23:28,720 Speaker 4: hardest things was she developed like a real terror of 470 00:23:28,760 --> 00:23:32,560 Speaker 4: the hospitals and of doctors, and so she would have 471 00:23:32,680 --> 00:23:35,960 Speaker 4: like little babies, right, it's just in a place where 472 00:23:36,040 --> 00:23:38,960 Speaker 4: you know, you can't intellectualize with a child why they 473 00:23:39,000 --> 00:23:41,800 Speaker 4: have to do all these things. And so she would 474 00:23:41,840 --> 00:23:45,200 Speaker 4: have panic attacks even when we would drive by the hospital. 475 00:23:45,400 --> 00:23:47,840 Speaker 4: And so that was another part of it that I 476 00:23:47,880 --> 00:23:51,600 Speaker 4: think made us really kind of take pause as parents. 477 00:23:51,720 --> 00:23:53,840 Speaker 4: And you know, even when she was in the hospital, 478 00:23:53,920 --> 00:23:56,960 Speaker 4: she just coped in just the most tragic ways. Right 479 00:23:57,040 --> 00:23:59,960 Speaker 4: like one time she was sick and had to be intobating, 480 00:24:00,160 --> 00:24:03,200 Speaker 4: she had a breathing tubein because she just couldn't get better. 481 00:24:03,760 --> 00:24:05,359 Speaker 4: The only thing that made her feel better is if 482 00:24:05,400 --> 00:24:08,000 Speaker 4: she could touch our faces. And so like my husband 483 00:24:08,000 --> 00:24:10,720 Speaker 4: and I just like rotated for days and days and 484 00:24:10,800 --> 00:24:13,000 Speaker 4: days just hovering over her little bed and she would 485 00:24:13,040 --> 00:24:16,120 Speaker 4: touch our noses. And you know, I think there comes 486 00:24:16,160 --> 00:24:19,040 Speaker 4: a point where you begin wondering, like what are we doing? 487 00:24:19,080 --> 00:24:22,200 Speaker 4: Where does this go? And I think her experience and 488 00:24:22,240 --> 00:24:26,080 Speaker 4: her reaction it really made us rethink kind of everything 489 00:24:26,080 --> 00:24:29,280 Speaker 4: that we were doing because she was living it right, 490 00:24:29,320 --> 00:24:32,960 Speaker 4: and her experience matters. I think it's easy to set 491 00:24:33,000 --> 00:24:35,200 Speaker 4: that aside when you want your kid to be around forever, 492 00:24:35,280 --> 00:24:37,240 Speaker 4: but we just we were confronted with it in a 493 00:24:37,240 --> 00:24:38,520 Speaker 4: way that we couldn't ignore. 494 00:24:39,400 --> 00:24:42,600 Speaker 2: Even in her illness, she was guiding you right, you 495 00:24:42,640 --> 00:24:44,960 Speaker 2: said earlier that she's the one that guided you to 496 00:24:45,000 --> 00:24:47,800 Speaker 2: get through those tough days and the reality of her situation. 497 00:24:47,920 --> 00:24:50,320 Speaker 2: But then even when she was sickest, she continued to 498 00:24:50,359 --> 00:24:52,679 Speaker 2: guide you. What did you decide to do. 499 00:24:54,359 --> 00:24:58,840 Speaker 4: During one of her like last hospital stays, she was 500 00:24:58,880 --> 00:25:01,840 Speaker 4: real pissed about it, and you know, we validated that, 501 00:25:01,960 --> 00:25:04,920 Speaker 4: like she could be angry. And we were leaving the hospital, 502 00:25:04,960 --> 00:25:07,080 Speaker 4: and I work at children's hospital now, and so I 503 00:25:07,119 --> 00:25:09,520 Speaker 4: know when kids leave, we blow bubbles and we wave 504 00:25:09,680 --> 00:25:12,399 Speaker 4: and try to make it like a kid friendly place. 505 00:25:12,600 --> 00:25:16,280 Speaker 4: And she was pissed and she said like, goodbye, stupid hospital, 506 00:25:16,320 --> 00:25:19,000 Speaker 4: like I'm never coming back here again. When I remember 507 00:25:19,160 --> 00:25:21,760 Speaker 4: kind of doing the mom thing and having a conversation 508 00:25:21,840 --> 00:25:23,920 Speaker 4: with her about I hope you don't have to come back, 509 00:25:23,960 --> 00:25:26,880 Speaker 4: but you probably will and I know you hate it, 510 00:25:26,960 --> 00:25:28,960 Speaker 4: but let's go home, and she was like, no, I'm 511 00:25:29,000 --> 00:25:32,560 Speaker 4: never coming back here again. And early on, when Mari was, 512 00:25:32,720 --> 00:25:34,639 Speaker 4: you know, first diagnosed, my husband and I made a 513 00:25:34,680 --> 00:25:37,199 Speaker 4: promise to each other that we were never going to 514 00:25:38,119 --> 00:25:41,800 Speaker 4: make her suffer. To prevent ours, I think it's easy 515 00:25:42,080 --> 00:25:46,760 Speaker 4: to prioritize the avoidance of that horrible thing that's coming 516 00:25:47,160 --> 00:25:49,720 Speaker 4: and so after she called us to the carpet, like 517 00:25:49,800 --> 00:25:52,960 Speaker 4: she often did, we talked to the team that was 518 00:25:53,000 --> 00:25:54,960 Speaker 4: taking care of her, and they were a palliative care 519 00:25:55,000 --> 00:25:58,400 Speaker 4: team that helped her have quality of life like in 520 00:25:58,440 --> 00:26:01,720 Speaker 4: the middle as a part of her illness and prioritized 521 00:26:02,600 --> 00:26:04,879 Speaker 4: not just doing all the things that were possible, but 522 00:26:05,000 --> 00:26:08,280 Speaker 4: making sure that she had joy and that she had play, 523 00:26:08,400 --> 00:26:11,600 Speaker 4: and that she had experiences and she had support, so 524 00:26:11,640 --> 00:26:14,320 Speaker 4: they would come to our house. So after that last 525 00:26:14,320 --> 00:26:17,199 Speaker 4: hospital's stay, after she when she became ill again, we 526 00:26:17,359 --> 00:26:19,560 Speaker 4: decided not to take her back to the hospital, and 527 00:26:20,200 --> 00:26:23,040 Speaker 4: the hospital came to us. She was put on the 528 00:26:23,080 --> 00:26:26,840 Speaker 4: hospice during her last illness, and we stayed home instead 529 00:26:26,840 --> 00:26:30,560 Speaker 4: of going to the hospital, and her providers came to 530 00:26:30,640 --> 00:26:33,960 Speaker 4: our house and helped make sure that she had all 531 00:26:34,040 --> 00:26:36,840 Speaker 4: of the things that she needed to be comfortable and 532 00:26:36,920 --> 00:26:39,440 Speaker 4: that we had all the resources we needed as parents 533 00:26:39,440 --> 00:26:42,680 Speaker 4: to support her through that illness. 534 00:26:43,920 --> 00:26:46,719 Speaker 2: That's beautiful that you were able to do that and 535 00:26:46,800 --> 00:26:48,959 Speaker 2: keep her comfortable in her final days. 536 00:26:49,800 --> 00:26:52,240 Speaker 3: So she celebrated her third birthday. 537 00:26:53,400 --> 00:26:57,200 Speaker 4: Yeah, she celebrated her third birthday right before Christmas, and 538 00:26:57,480 --> 00:26:59,920 Speaker 4: we had a really fun Christmas to make a Way 539 00:27:00,160 --> 00:27:02,880 Speaker 4: Foundation set her up with a special like one on 540 00:27:02,880 --> 00:27:07,000 Speaker 4: one visit with Santa Claus, and she was very demanding 541 00:27:07,000 --> 00:27:08,920 Speaker 4: with Santa Claus that year, which is also a very 542 00:27:08,920 --> 00:27:12,639 Speaker 4: funny story. She we like went to meet Santa and 543 00:27:12,680 --> 00:27:15,320 Speaker 4: she wanted a microphone. So she did like the whole 544 00:27:15,320 --> 00:27:17,080 Speaker 4: meet and greet with Santa, and we were getting ready 545 00:27:17,119 --> 00:27:19,239 Speaker 4: to leave and she was like, I'm not leaving here 546 00:27:19,280 --> 00:27:22,200 Speaker 4: without my microphone and we were like, oh, we didn't 547 00:27:22,240 --> 00:27:24,360 Speaker 4: tell you. Santa is going to come bring you. Anyways, 548 00:27:24,400 --> 00:27:27,120 Speaker 4: it was a whole thing, but we saw the Nutcracker. 549 00:27:27,240 --> 00:27:30,440 Speaker 4: We did all the things. And so when January came, 550 00:27:30,480 --> 00:27:33,840 Speaker 4: she got sick again and she was really in and 551 00:27:33,880 --> 00:27:37,240 Speaker 4: out of it for a few days. And she woke 552 00:27:37,359 --> 00:27:39,679 Speaker 4: up and she looked at me and my husband and 553 00:27:39,720 --> 00:27:42,280 Speaker 4: she said, mom, I'm going to be a butterfly. I 554 00:27:42,320 --> 00:27:44,639 Speaker 4: want to be a butterfly and fly into the sky, 555 00:27:44,840 --> 00:27:49,199 Speaker 4: like won't that be nice? And she died the next morning. 556 00:27:49,320 --> 00:27:52,000 Speaker 4: She didn't wake up again. And so that night, you know, 557 00:27:52,040 --> 00:27:54,560 Speaker 4: we told her the story of when she was born 558 00:27:54,600 --> 00:27:57,200 Speaker 4: and how awful it was, because she loved that so much, 559 00:27:57,280 --> 00:28:01,280 Speaker 4: and you know, we read stories and she was able 560 00:28:01,320 --> 00:28:04,560 Speaker 4: to die where she wanted to be at home with 561 00:28:05,040 --> 00:28:08,040 Speaker 4: the dog in the bed and without all the machines 562 00:28:08,080 --> 00:28:11,280 Speaker 4: and all the beeping. It was like the hardest thing ever. 563 00:28:11,720 --> 00:28:16,080 Speaker 4: And I'm so grateful that we had the resources and 564 00:28:16,119 --> 00:28:19,600 Speaker 4: the support really to make sure that she was able 565 00:28:19,640 --> 00:28:21,440 Speaker 4: to die in the way that she wanted to die, 566 00:28:21,560 --> 00:28:24,120 Speaker 4: and that she wasn't surrounded by the thing that terrified 567 00:28:24,119 --> 00:28:28,000 Speaker 4: her the most. And so to have the community come 568 00:28:28,200 --> 00:28:31,000 Speaker 4: and be with her and us in that way, it 569 00:28:31,119 --> 00:28:33,600 Speaker 4: just takes my breath away to remember those moments, and 570 00:28:34,119 --> 00:28:36,399 Speaker 4: I'm so grateful that she had that and we had that. 571 00:28:40,120 --> 00:28:43,800 Speaker 1: You know, usually it's me filling space while Ash is 572 00:28:43,880 --> 00:28:47,040 Speaker 1: like collecting herself. And I gotta tell you, on this one, 573 00:28:47,080 --> 00:28:51,160 Speaker 1: it was like, I don't tear up get emotional often, 574 00:28:51,400 --> 00:28:53,600 Speaker 1: and it's not because I mean, it's not because of 575 00:28:53,600 --> 00:28:55,520 Speaker 1: the marine thing and all that crap. I think it's 576 00:28:55,640 --> 00:28:57,800 Speaker 1: just a thing. But yeah, I was fighting it on 577 00:28:57,880 --> 00:29:02,400 Speaker 1: that one. Yeah, I gotta tell you, like, it's what 578 00:29:02,520 --> 00:29:07,920 Speaker 1: a blessing that it was on her terms, you know, 579 00:29:08,120 --> 00:29:10,320 Speaker 1: because we don't always get that. I mean, you work 580 00:29:10,360 --> 00:29:14,000 Speaker 1: in a hospital, you know, for a fact not always 581 00:29:14,040 --> 00:29:18,120 Speaker 1: the case. And the fact that you and Jamie and 582 00:29:18,160 --> 00:29:20,680 Speaker 1: your family in the community. You were able to find 583 00:29:20,760 --> 00:29:25,240 Speaker 1: beauty in something that was just so tragic. Is such 584 00:29:25,240 --> 00:29:27,240 Speaker 1: a rarity, but I think that's why you have such 585 00:29:27,240 --> 00:29:30,560 Speaker 1: a magnetic soul, and I can only imagine Jamie's the 586 00:29:30,560 --> 00:29:31,120 Speaker 1: same way. 587 00:29:31,320 --> 00:29:33,920 Speaker 2: It's so beautiful, And like you said, I mean the 588 00:29:33,920 --> 00:29:36,520 Speaker 2: fact that she was there bringing people together in her 589 00:29:36,560 --> 00:29:43,840 Speaker 2: final moments. What was life like for you after that? 590 00:29:43,840 --> 00:29:47,040 Speaker 4: That first year is kind of body Honestly, I don't 591 00:29:47,320 --> 00:29:50,480 Speaker 4: remember all of it. But I went back to work 592 00:29:50,840 --> 00:29:54,120 Speaker 4: like three months after she died because I realized I 593 00:29:54,160 --> 00:29:58,880 Speaker 4: couldn't just be at home. I just needed something else 594 00:29:58,920 --> 00:30:02,160 Speaker 4: to think about. And you know, we kind of trudged 595 00:30:02,160 --> 00:30:05,320 Speaker 4: along in the beginning and just had a lot of 596 00:30:05,360 --> 00:30:08,880 Speaker 4: folks that were looking out for us. And we were 597 00:30:08,920 --> 00:30:12,160 Speaker 4: able to go to Hawaii together with my parents, which 598 00:30:12,200 --> 00:30:14,240 Speaker 4: was a place that she had been to and we 599 00:30:14,280 --> 00:30:17,800 Speaker 4: loved obviously, and so we just tried to figure out how, 600 00:30:18,560 --> 00:30:20,280 Speaker 4: you know, to put one foot in front of the other. 601 00:30:20,480 --> 00:30:22,239 Speaker 4: It feels like people are like, I don't know how 602 00:30:22,280 --> 00:30:24,840 Speaker 4: you did it. I don't know what the other option was. Right, 603 00:30:24,920 --> 00:30:28,000 Speaker 4: we were still here and she wasn't, and we had 604 00:30:28,000 --> 00:30:30,360 Speaker 4: to learn how to live without her. I ended up 605 00:30:30,400 --> 00:30:33,000 Speaker 4: applying to go to grad school and the following year 606 00:30:33,520 --> 00:30:36,040 Speaker 4: went back to get my master's in social work because 607 00:30:36,040 --> 00:30:38,600 Speaker 4: that was kind of my journey anyways, and it felt 608 00:30:38,640 --> 00:30:41,880 Speaker 4: like the right time. And Jamie always wanted to be 609 00:30:41,920 --> 00:30:46,440 Speaker 4: a firefighter and was kind of dabbling, and he really 610 00:30:46,480 --> 00:30:50,200 Speaker 4: committed to that process too, and was really actively trying 611 00:30:50,240 --> 00:30:52,640 Speaker 4: to get hired with the Seattle Fire Department. And so 612 00:30:52,760 --> 00:30:57,800 Speaker 4: we just focused on work and on you know, just 613 00:30:57,960 --> 00:31:01,960 Speaker 4: those kind of things because we had to. And I 614 00:31:01,960 --> 00:31:03,720 Speaker 4: think it was the only thing we kind of knew 615 00:31:03,760 --> 00:31:05,200 Speaker 4: how to do, and it was the only thing that 616 00:31:05,360 --> 00:31:08,440 Speaker 4: was like future oriented that I think we could really 617 00:31:08,480 --> 00:31:10,800 Speaker 4: hold on to. It was hard to look out into 618 00:31:10,840 --> 00:31:14,000 Speaker 4: the future and think about how long life was going 619 00:31:14,040 --> 00:31:16,640 Speaker 4: to be without Mari, even though we both knew that 620 00:31:16,680 --> 00:31:19,480 Speaker 4: we wanted to live it, it just felt too hard. 621 00:31:19,880 --> 00:31:23,080 Speaker 2: What a beautiful thing that you both chose fields where 622 00:31:23,080 --> 00:31:25,920 Speaker 2: you're caring for people, where you're taking care of people. 623 00:31:26,320 --> 00:31:29,240 Speaker 1: If like guys and gals like me, you know, that 624 00:31:29,360 --> 00:31:31,640 Speaker 1: served in the military and had to go abroad, and 625 00:31:31,720 --> 00:31:35,880 Speaker 1: like we couldn't do stuff that we do without knowing 626 00:31:36,160 --> 00:31:39,640 Speaker 1: there's people like Jamie and you to take care of 627 00:31:39,680 --> 00:31:44,280 Speaker 1: ours here while we're there. We're literally we're all battened 628 00:31:44,280 --> 00:31:47,560 Speaker 1: for the same team when it comes to taking care 629 00:31:47,600 --> 00:31:49,760 Speaker 1: of our loved ones. And so what you guys do 630 00:31:49,840 --> 00:31:53,480 Speaker 1: is admirable and comes with its own challenges and struggles. 631 00:31:53,520 --> 00:31:55,920 Speaker 1: I mean, they're not the easiest jobs in the world. 632 00:31:56,280 --> 00:31:59,440 Speaker 1: Just like you said, you didn't have a in the Marines, 633 00:31:59,480 --> 00:32:01,440 Speaker 1: you'd call it hip pocket class. Like, we didn't get 634 00:32:01,440 --> 00:32:04,600 Speaker 1: a hip pocket class for whatever. Clearly you guys didn't 635 00:32:04,640 --> 00:32:07,400 Speaker 1: have that. How do you prepare for that? No idea, 636 00:32:07,520 --> 00:32:08,360 Speaker 1: We're just doing it. 637 00:32:09,040 --> 00:32:11,800 Speaker 4: Yeah, yeah, I think that's exactly what it was, right. 638 00:32:11,840 --> 00:32:13,800 Speaker 4: We just were like, we have to figure it out. 639 00:32:13,960 --> 00:32:17,000 Speaker 4: And you know, Mari, like I said, she was this 640 00:32:17,040 --> 00:32:19,360 Speaker 4: tiny person, but she had a really like deep and 641 00:32:19,440 --> 00:32:23,920 Speaker 4: generous soul. And we talked a lot about gratitude with her, 642 00:32:24,760 --> 00:32:28,000 Speaker 4: just because I think it's important and even in the 643 00:32:28,000 --> 00:32:31,440 Speaker 4: context of like how hard so many things were. I 644 00:32:31,440 --> 00:32:33,600 Speaker 4: think we had a lot of conversations as a family 645 00:32:33,680 --> 00:32:37,920 Speaker 4: about how like fortunate we are to have so much 646 00:32:38,040 --> 00:32:40,120 Speaker 4: and to have so many people that love us. And 647 00:32:40,720 --> 00:32:42,960 Speaker 4: she didn't get in trouble often. But one of the 648 00:32:43,000 --> 00:32:47,040 Speaker 4: things that I remember so deeply is that when she 649 00:32:47,200 --> 00:32:49,280 Speaker 4: was being naughty, you know, or something, you know, we 650 00:32:49,400 --> 00:32:52,200 Speaker 4: tell her like, Mari, you're not being grateful right now, 651 00:32:52,240 --> 00:32:54,640 Speaker 4: and she would cry. She'd go, I want to be 652 00:32:54,680 --> 00:32:58,520 Speaker 4: grateful more. I want to be grateful, and she would cry. Right. 653 00:32:58,640 --> 00:33:00,680 Speaker 4: She just thought was like the worst the thing for 654 00:33:00,720 --> 00:33:04,000 Speaker 4: her and the birthday that she had before she died, 655 00:33:04,280 --> 00:33:06,480 Speaker 4: she didn't get to go to her party because she 656 00:33:06,560 --> 00:33:08,600 Speaker 4: had to go to the hospital that morning she had 657 00:33:08,600 --> 00:33:12,080 Speaker 4: gotten sick, and it just felt like a really cruel outcome. 658 00:33:12,320 --> 00:33:15,280 Speaker 4: But this was her third birthday and that winter we 659 00:33:15,360 --> 00:33:19,200 Speaker 4: had talked about people that were experiencing homelessness, and she 660 00:33:19,400 --> 00:33:21,720 Speaker 4: asked me if we could buy houses for all of 661 00:33:21,760 --> 00:33:24,280 Speaker 4: the families, and you know, I told her that we couldn't. 662 00:33:24,880 --> 00:33:27,680 Speaker 4: She then said, then can we at least buy the mittens? 663 00:33:27,960 --> 00:33:31,120 Speaker 4: And so for her birthday we asked people to bring 664 00:33:31,160 --> 00:33:35,200 Speaker 4: mittens and warm items to give to our community. And 665 00:33:35,400 --> 00:33:38,080 Speaker 4: it's like, I don't know a lot of children that 666 00:33:38,360 --> 00:33:40,400 Speaker 4: ask for that, right, And so she just had this 667 00:33:40,600 --> 00:33:45,320 Speaker 4: like I know, she was only three, just barely, but 668 00:33:45,480 --> 00:33:48,920 Speaker 4: she had this like deep spirit that I think forced 669 00:33:48,960 --> 00:33:52,160 Speaker 4: everybody to be just a little bit better. And so 670 00:33:52,280 --> 00:33:54,800 Speaker 4: when Jamie and I were figuring out what we were 671 00:33:54,840 --> 00:33:56,680 Speaker 4: going to do and how we were going to do it. 672 00:33:56,880 --> 00:33:59,600 Speaker 4: Being in service to our community was already a value 673 00:33:59,600 --> 00:34:03,920 Speaker 4: that we had, but it just felt like we had 674 00:34:03,960 --> 00:34:06,560 Speaker 4: to do right by Mari in some way, and it 675 00:34:06,600 --> 00:34:10,040 Speaker 4: didn't need to be you know, having a foundation in 676 00:34:10,080 --> 00:34:12,800 Speaker 4: her name or whatever. You know, people do this in 677 00:34:12,840 --> 00:34:14,960 Speaker 4: a lot of different ways, but it felt like if 678 00:34:15,000 --> 00:34:17,080 Speaker 4: we were going to do one thing to honor her 679 00:34:17,520 --> 00:34:20,080 Speaker 4: at the time, it really felt like we needed to 680 00:34:20,800 --> 00:34:24,680 Speaker 4: live with that spirit and so our organic next steps 681 00:34:24,760 --> 00:34:26,759 Speaker 4: we already were kind of in the fields that we 682 00:34:26,800 --> 00:34:29,319 Speaker 4: wanted to be in, and so it just felt not 683 00:34:29,440 --> 00:34:33,680 Speaker 4: easy but so important to kind of fulfill those missions 684 00:34:33,719 --> 00:34:35,960 Speaker 4: and to live in service and work in service of 685 00:34:36,000 --> 00:34:38,560 Speaker 4: our communities in the way that we do differently and 686 00:34:38,600 --> 00:34:41,480 Speaker 4: sometimes they overlap, but we. 687 00:34:41,560 --> 00:34:42,759 Speaker 3: Greatly appreciate that. 688 00:34:42,920 --> 00:34:46,799 Speaker 2: And thank you for being such amazing, strong parents who 689 00:34:46,880 --> 00:34:50,959 Speaker 2: teach gratitude. Sometimes it's so hard to do to find 690 00:34:51,000 --> 00:34:54,160 Speaker 2: that space. I can completely relate todriw. I want to 691 00:34:54,160 --> 00:34:57,520 Speaker 2: be grateful. I get it, I get it, but sometimes 692 00:34:57,560 --> 00:35:00,520 Speaker 2: it's easier said than done. In taking care of the 693 00:35:00,560 --> 00:35:04,080 Speaker 2: two of you, you kind of found a love and travel. 694 00:35:04,840 --> 00:35:06,560 Speaker 3: What do you love so much about travel? What's your 695 00:35:06,560 --> 00:35:07,480 Speaker 3: favorite place you've been? 696 00:35:08,120 --> 00:35:08,480 Speaker 1: Oh? 697 00:35:08,560 --> 00:35:11,960 Speaker 4: Man, oh, you know, I have a hard time identifying 698 00:35:12,000 --> 00:35:14,680 Speaker 4: a favorite place. But last year we took a sailboat 699 00:35:14,719 --> 00:35:20,120 Speaker 4: down the Nile and that was magical and incredible. It 700 00:35:20,200 --> 00:35:24,200 Speaker 4: is like a part of gratitude practice. And I just 701 00:35:24,239 --> 00:35:28,880 Speaker 4: feel like my capacity for love and compassion and empathy 702 00:35:29,200 --> 00:35:33,120 Speaker 4: and joy grows like exponentially every single time I go somewhere. 703 00:35:33,440 --> 00:35:36,000 Speaker 4: The world is kind and people are kind, and I 704 00:35:36,040 --> 00:35:38,080 Speaker 4: mean the number of people that have invited me back 705 00:35:38,120 --> 00:35:41,200 Speaker 4: to their house for tea, or brought me home for dinner, 706 00:35:41,320 --> 00:35:43,440 Speaker 4: or helped us along our way. It just is this 707 00:35:43,520 --> 00:35:46,759 Speaker 4: way of remembering that the world is full of goodness 708 00:35:47,040 --> 00:35:51,319 Speaker 4: and also in the sadness that we've experienced, we are 709 00:35:51,360 --> 00:35:54,799 Speaker 4: not unique in that way, right that the people are 710 00:35:54,840 --> 00:35:58,800 Speaker 4: experiencing loss and figuring out how to keep it pushing 711 00:35:59,480 --> 00:36:02,000 Speaker 4: all over the world. And so there is something really 712 00:36:02,040 --> 00:36:05,080 Speaker 4: incredible about just opening up my soul and my heart 713 00:36:05,200 --> 00:36:09,560 Speaker 4: to joy and to beauty and sometimes the hard things. 714 00:36:09,840 --> 00:36:11,839 Speaker 4: And Jamie is really the same. So we just are 715 00:36:11,920 --> 00:36:15,920 Speaker 4: always planning an adventure because we just pick up memories 716 00:36:15,920 --> 00:36:19,880 Speaker 4: and friends and loved ones and stories and different ways 717 00:36:19,920 --> 00:36:24,040 Speaker 4: of feeling grateful with every single place, but Egypt comes 718 00:36:24,080 --> 00:36:26,560 Speaker 4: to the top of the mind because it just was like 719 00:36:26,680 --> 00:36:28,520 Speaker 4: live in I don't know, it just felt fake. It 720 00:36:28,560 --> 00:36:31,200 Speaker 4: was incredible, not just because of the sites, the people 721 00:36:31,280 --> 00:36:34,200 Speaker 4: were were wonderful, right, And so those are the memories 722 00:36:34,239 --> 00:36:35,760 Speaker 4: that I think I cherish the most. 723 00:36:36,280 --> 00:36:40,640 Speaker 1: By the way you just described travel, I'm pretty sure 724 00:36:40,680 --> 00:36:45,960 Speaker 1: you and Ashley were separated at birth. Thank you. I'm serious, 725 00:36:46,000 --> 00:36:50,239 Speaker 1: Like it sounds almost verbatim how she would describe it, 726 00:36:50,280 --> 00:36:51,840 Speaker 1: because I mean, I love it and love seeing the 727 00:36:51,840 --> 00:36:53,879 Speaker 1: new places and all that, but I mean she could, 728 00:36:54,080 --> 00:36:57,439 Speaker 1: she would do it every week of the year if she. 729 00:36:57,360 --> 00:36:59,680 Speaker 3: Could, just getting to see how other people live. 730 00:36:59,760 --> 00:37:03,120 Speaker 2: Really, our little bubble that we live in is just 731 00:37:03,200 --> 00:37:05,640 Speaker 2: that it's a little bubble. There's a great, big world 732 00:37:05,640 --> 00:37:08,840 Speaker 2: out there, full of beautiful people that have such different 733 00:37:08,920 --> 00:37:12,560 Speaker 2: life experiences than us, and it just it's a perspective 734 00:37:12,600 --> 00:37:14,839 Speaker 2: thing for me. I've always, since I was a child, 735 00:37:14,920 --> 00:37:17,520 Speaker 2: wanted to broaden my horizons and see the world and 736 00:37:17,600 --> 00:37:18,400 Speaker 2: meet all the people. 737 00:37:19,040 --> 00:37:21,200 Speaker 3: My wonderlust, that's what I call it, because I love 738 00:37:21,239 --> 00:37:21,720 Speaker 3: to wonder. 739 00:37:22,239 --> 00:37:26,240 Speaker 1: I gotta ask Ma after the journey you and Jamie 740 00:37:26,600 --> 00:37:30,240 Speaker 1: have been through. What's your life's mission at this point? 741 00:37:30,920 --> 00:37:34,640 Speaker 4: That is not a heavy or deep question at all. 742 00:37:34,880 --> 00:37:38,360 Speaker 1: I'm a very surface level kind of guy, you know. 743 00:37:38,920 --> 00:37:42,160 Speaker 4: I think there's a lot of versions of this, but 744 00:37:42,360 --> 00:37:46,640 Speaker 4: right now I think my mission is honestly to just 745 00:37:46,840 --> 00:37:51,560 Speaker 4: live with as much joy and as much gratitude as 746 00:37:51,719 --> 00:37:56,520 Speaker 4: robustly as Marie taught me. And that's Jamie too, And 747 00:37:56,560 --> 00:37:59,600 Speaker 4: it looks different for us right in different ways at work, 748 00:38:00,160 --> 00:38:03,560 Speaker 4: you know, we're different versions of ourselves. And he's so 749 00:38:04,040 --> 00:38:06,680 Speaker 4: focused on the children in our community and making sure 750 00:38:06,680 --> 00:38:08,680 Speaker 4: that they have a space at his station and that 751 00:38:08,719 --> 00:38:11,560 Speaker 4: they feel seen, you know. And it's in travel, it's 752 00:38:11,680 --> 00:38:15,120 Speaker 4: finding the corners of the world that maybe most call 753 00:38:15,280 --> 00:38:17,799 Speaker 4: us and connecting with the people there. And so it 754 00:38:17,880 --> 00:38:21,560 Speaker 4: really is just to grab life by the horns and 755 00:38:21,640 --> 00:38:24,880 Speaker 4: to live with gratitude and joy and purpose and hope 756 00:38:25,239 --> 00:38:27,719 Speaker 4: as much as we can. And it's not that it 757 00:38:27,719 --> 00:38:30,840 Speaker 4: doesn't get hard, right, That life gets hard sometimes, but 758 00:38:31,000 --> 00:38:33,279 Speaker 4: it's pretty easy I think at this point for us 759 00:38:33,280 --> 00:38:36,120 Speaker 4: to find ourselves back towards the center and to be 760 00:38:36,239 --> 00:38:40,399 Speaker 4: centered again. Because of all the things that we've lived together, right, 761 00:38:40,440 --> 00:38:43,640 Speaker 4: we're stronger than we ever thought we could be. And 762 00:38:43,800 --> 00:38:45,920 Speaker 4: Marie is with us in a way that is different 763 00:38:46,080 --> 00:38:48,680 Speaker 4: than a few years ago when we were grieving parents, 764 00:38:48,800 --> 00:38:52,359 Speaker 4: And I'm grateful for that part of the journey too, 765 00:38:52,480 --> 00:38:54,440 Speaker 4: of just the way that I know that she's here 766 00:38:54,520 --> 00:38:57,280 Speaker 4: and I feel her, and the way that I'm reminded 767 00:38:57,360 --> 00:38:59,600 Speaker 4: of how wonderful she is that I didn't think was 768 00:38:59,600 --> 00:39:03,160 Speaker 4: possible kind of earlier on in my story. So we're 769 00:39:03,200 --> 00:39:05,480 Speaker 4: just living with joy and gratitude all the time. 770 00:39:06,320 --> 00:39:09,719 Speaker 3: Thank you, Maya Scott. Thank you so much for your perspective. 771 00:39:09,800 --> 00:39:12,680 Speaker 2: Thank you for your love and your gratitude and your 772 00:39:12,760 --> 00:39:15,680 Speaker 2: courage to come and tell this story today. It's just 773 00:39:15,760 --> 00:39:20,040 Speaker 2: the perspective we need to continue to go forward in 774 00:39:20,080 --> 00:39:23,480 Speaker 2: our days, what days we're given right and just honoring 775 00:39:23,520 --> 00:39:27,760 Speaker 2: and remembering your beautiful daughter and knowing that there's beautiful 776 00:39:27,800 --> 00:39:31,200 Speaker 2: butterflies flying around all over the place. And I just 777 00:39:31,360 --> 00:39:33,959 Speaker 2: truly appreciate the joy that you've given me and given 778 00:39:34,040 --> 00:39:34,600 Speaker 2: us today. 779 00:39:35,160 --> 00:39:37,920 Speaker 4: Thank you for giving me an opportunity to share a 780 00:39:37,960 --> 00:39:41,920 Speaker 4: little bit of Marie's story. She really magic and body. 781 00:39:42,200 --> 00:39:44,440 Speaker 4: So I'm grateful that more people will be able to 782 00:39:44,480 --> 00:39:45,000 Speaker 4: know that. 783 00:39:45,760 --> 00:39:47,760 Speaker 1: You and Jamie both even though you know, we didn't 784 00:39:47,760 --> 00:39:49,719 Speaker 1: have the pleasure of meeting him yet, but we'll get 785 00:39:49,719 --> 00:39:51,279 Speaker 1: to hang out with him and when we all go 786 00:39:51,360 --> 00:39:55,360 Speaker 1: to Hawaii. But I got to tell you, I happen 787 00:39:55,440 --> 00:40:01,719 Speaker 1: to know a lot of really tough, convicted people. It's 788 00:40:01,760 --> 00:40:03,600 Speaker 1: such a gift to get to meet someone like you 789 00:40:03,640 --> 00:40:08,880 Speaker 1: because you're those things, but your compassion and your gratitude 790 00:40:08,920 --> 00:40:14,200 Speaker 1: and your joy and your love far outshines those things. 791 00:40:14,280 --> 00:40:17,319 Speaker 1: And so you're a very special, unique person. And I 792 00:40:17,400 --> 00:40:21,120 Speaker 1: want you to know that this particular episode made me 793 00:40:21,200 --> 00:40:23,120 Speaker 1: a better person. So thank you for that. 794 00:40:23,960 --> 00:40:28,560 Speaker 4: Oh, thank you. Yeah, Mari really is really the best teacher. 795 00:40:28,719 --> 00:40:31,400 Speaker 4: So I'm happy to be the person to spread that message. 796 00:40:31,440 --> 00:40:33,200 Speaker 4: And yeah, I'm grateful. 797 00:40:33,680 --> 00:40:35,240 Speaker 3: Thank you so much for listening. 798 00:40:35,360 --> 00:40:37,840 Speaker 2: If this episode touched you today, please share it and 799 00:40:37,880 --> 00:40:39,640 Speaker 2: be part of making someone's day better. 800 00:40:40,480 --> 00:40:42,960 Speaker 1: Put on your bad ass capes like Mari Maya and 801 00:40:43,040 --> 00:40:46,520 Speaker 1: Jamie and go be great today. And remember you can't 802 00:40:46,520 --> 00:40:49,840 Speaker 1: do epic stuff without epic people. Thank you for listening 803 00:40:50,080 --> 00:40:50,880 Speaker 1: to the good Stuff. 804 00:40:54,920 --> 00:40:57,080 Speaker 3: The Good Stuff is executive produced. 805 00:40:56,719 --> 00:41:00,600 Speaker 2: By Ashley Shick, Jacob Shick, Leah Pictures, and you Code Media. 806 00:41:01,160 --> 00:41:04,799 Speaker 2: Posted by Ashley Shick and Jacob Schick, Produced by Nick 807 00:41:04,920 --> 00:41:09,680 Speaker 2: Cassellini and Ryan Counts House post production supervisor Will Tindy. 808 00:41:10,480 --> 00:41:14,520 Speaker 2: Music editing by Will haywood Smith, edited by Mike Robinson,