WEBVTT - A Butterfly Gets Her Wings with Maya Scott 0:00:08.160 --> 0:00:10.319 Welcome to the Good Stuff. I'm Jacob Shick and I'm 0:00:10.400 --> 0:00:12.680 joined by my co host and wife, Ashley Shick. 0:00:13.440 --> 0:00:15.880 Jake is a third generation combat Marine and I'm a 0:00:15.920 --> 0:00:19.640 gold starred granddaughter. We work together to serve military veterans, 0:00:19.720 --> 0:00:23.440 first responders, frontline healthcare workers, and their families with mental 0:00:23.440 --> 0:00:26.840 and emotional wellness through traditional and non traditional therapy. 0:00:27.000 --> 0:00:28.720 At One Tribe Foundation. 0:00:28.920 --> 0:00:31.320 We believe everyone has a story to tell, not only 0:00:31.360 --> 0:00:33.640 about the peaks, but also the valleys they've been through 0:00:33.680 --> 0:00:35.040 to get them to where they are today. 0:00:35.600 --> 0:00:38.040 Each week, we invite a guest to tell us their story, 0:00:38.240 --> 0:00:40.600 to share with us the lessons they've learned that shaped 0:00:40.600 --> 0:00:42.600 who they are and what they're doing to pay it 0:00:42.640 --> 0:00:43.920 forward and give back. 0:00:44.479 --> 0:00:46.600 Our mission with this show is to dig deep into 0:00:46.600 --> 0:00:49.040 our guest's journeys so that we can celebrate the hope 0:00:49.040 --> 0:00:51.120 and inspiration their story has to offer. 0:00:51.440 --> 0:00:53.320 We're thrilled you're joining us again. 0:00:53.880 --> 0:00:55.320 Welcome to the Good Stuff. 0:00:56.040 --> 0:00:59.280 Our guest today is Maya Scott. Her story is about 0:00:59.320 --> 0:01:03.320 young love, pregnancy, parenthood, and the unthinkable. 0:01:04.600 --> 0:01:08.679 Maya's daughter Mariy, was diagnosed with spinal muscular atrophy at 0:01:08.720 --> 0:01:12.120 six months old and passed away shortly after turning three. 0:01:12.840 --> 0:01:16.640 Mary's life was full of joy, love and hardships, and 0:01:16.680 --> 0:01:18.839 we are so lucky to have Maya on the show 0:01:18.880 --> 0:01:22.200 today to give us a glimpse of the glory that 0:01:22.400 --> 0:01:23.720 was and is Mariy. 0:01:24.720 --> 0:01:28.240 After Marie passed, Maya found herself driven to help families 0:01:28.360 --> 0:01:30.520 like hers, and today she is the director of the 0:01:30.560 --> 0:01:34.120 Center for Diversity and Health Equity at Seattle Children's Hospital. 0:01:34.600 --> 0:01:38.360 Her husband Jamie achieved his lifelong dream of becoming a firefighter, 0:01:38.520 --> 0:01:41.760 serving the neighborhood he grew up in. Facing a mother 0:01:41.800 --> 0:01:45.160 and father's worst nightmare, these two found beauty in life 0:01:45.200 --> 0:01:48.360 through Mari's enduring spirit, which has led them to travel 0:01:48.360 --> 0:01:50.520 the world and take care of their community. 0:01:51.800 --> 0:01:56.680 This is a miraculous conversation about love, strength, and living 0:01:56.720 --> 0:01:57.720 life to the fullest. 0:02:04.920 --> 0:02:07.520 Maya Scott, we can't thank you enough for joining us 0:02:07.520 --> 0:02:10.160 to tell us your story and the story of your 0:02:10.160 --> 0:02:13.160 beautiful daughter, Mari. We know that you and your husband 0:02:13.240 --> 0:02:16.400 Jamie live your lives in honor and celebration of Mari's 0:02:16.440 --> 0:02:19.280 three beautiful years on this earth, and it is such 0:02:19.280 --> 0:02:21.640 a privilege to have you on the show to spread 0:02:21.639 --> 0:02:22.280 her spirit. 0:02:23.360 --> 0:02:26.120 That's exactly why right. Every single time I have an 0:02:26.120 --> 0:02:31.080 opportunity to talk about just the really robust and incredible 0:02:31.120 --> 0:02:34.160 way that she lived her life, feels like a really 0:02:34.160 --> 0:02:36.840 small ask to share that, because I think there's so 0:02:36.919 --> 0:02:39.760 many things that people need to hear just about the 0:02:39.800 --> 0:02:42.320 way that she taught all of us. So I'm grateful 0:02:42.320 --> 0:02:44.360 for the opportunity to share a little bit more about 0:02:44.400 --> 0:02:45.400 her in the space. 0:02:46.240 --> 0:02:50.880 We're eternally grateful to you and your courage for doing this, 0:02:51.000 --> 0:02:55.760 and so look to get us started. First things first, 0:02:56.639 --> 0:02:57.919 how did you and Jamie meet. 0:03:00.080 --> 0:03:02.280 We met in high school. We were high school sweethearts, 0:03:02.520 --> 0:03:05.280 and we had health class together, which is kind of 0:03:05.280 --> 0:03:07.320 funny if you know what you learn in health class. 0:03:07.360 --> 0:03:10.960 And we were assigned a group project in class, and 0:03:11.320 --> 0:03:13.840 for some reason, like he scooted his chair all the 0:03:13.880 --> 0:03:15.720 way across the room so that he could be in 0:03:15.720 --> 0:03:18.560 my group, which should have been a sign. And the 0:03:18.600 --> 0:03:21.399 rest was history. We fell in love and I went 0:03:21.440 --> 0:03:23.600 home and told my mom like after I met him, 0:03:24.160 --> 0:03:26.080 that I met the guy I'm going to marry today, 0:03:26.120 --> 0:03:28.119 and I was like fifteen years old, and my mom 0:03:28.200 --> 0:03:31.040 was like sure, like everybody says that. And then at 0:03:31.080 --> 0:03:33.360 my wedding, I got to be really smug and rude 0:03:33.360 --> 0:03:36.640 about it because we got married. So yeah, it was great. 0:03:36.960 --> 0:03:40.600 You're like I told you so, Yep, exactly, that's exactly 0:03:40.640 --> 0:03:41.280 what I said. 0:03:41.600 --> 0:03:42.920 I'm thinking back to high school. 0:03:43.000 --> 0:03:45.600 Did he throw any really great, you know, pickup line 0:03:45.640 --> 0:03:47.560 down or anything, or he just I mean. 0:03:47.480 --> 0:03:49.840 Yeah, he scooted his chair all the way over to you. 0:03:50.120 --> 0:03:53.240 Or did he just completely invade your personal. 0:03:52.840 --> 0:03:55.080 Space a combination. 0:03:55.600 --> 0:03:56.120 He didn't. 0:03:56.360 --> 0:03:59.480 He wasn't like, you know, dropping pickup lines and stuff. 0:03:59.520 --> 0:04:02.040 But after we started dating, like, he still had a 0:04:02.080 --> 0:04:05.000 paper route. It was that deep in back in time, 0:04:05.400 --> 0:04:07.400 and he used his paper route money to bring me 0:04:07.520 --> 0:04:10.880 roses to school on our month anniversary every single month, 0:04:10.920 --> 0:04:13.160 and so it wasn't a pickup line, but it was 0:04:13.240 --> 0:04:16.000 game right. I was like, the paper route money to 0:04:16.080 --> 0:04:18.560 buy the roses to bring to school felt like an 0:04:18.640 --> 0:04:20.919 extreme flex when you were fifteen years old. It was 0:04:21.000 --> 0:04:22.599 very romantic that. 0:04:22.880 --> 0:04:23.120 Yeah. 0:04:23.160 --> 0:04:26.599 I mean to the ladies on this, I'm thinking to myself, like, 0:04:27.320 --> 0:04:29.800 come on, Jamie, like you're making the rest of us 0:04:29.839 --> 0:04:30.720 look horrible. 0:04:31.880 --> 0:04:35.360 That's amazing and okay, so high school, sweetheart, and then 0:04:35.480 --> 0:04:37.880 you did you wound up and got hitched. 0:04:38.560 --> 0:04:41.719 Yeah, so we got married super young. We got married 0:04:41.720 --> 0:04:45.120 when we were twenty, and I tell people like, of course, 0:04:45.160 --> 0:04:47.359 we have this wonderful love story, but it's also like 0:04:47.400 --> 0:04:49.080 the dumbest thing I ever did. I don't know if 0:04:49.080 --> 0:04:50.960 both things can be true at the same time. But 0:04:51.000 --> 0:04:53.720 I don't recommend children to get married when they're twenty, 0:04:54.040 --> 0:04:56.600 but here we are. Yes, we got married when we 0:04:56.600 --> 0:04:59.920 were twenty and had a very small wedding which is 0:05:00.080 --> 0:05:02.600 our family, and then a big reception with our massive 0:05:02.640 --> 0:05:05.400 families back at home, and then like a month later, 0:05:05.440 --> 0:05:07.719 we moved to Hawaii to start the rest of our lives. 0:05:07.720 --> 0:05:10.960 And it was just a blast, I mean, to be newlyweds, 0:05:10.960 --> 0:05:13.800 and I did my undergrad at University of Hawaii, and 0:05:14.600 --> 0:05:16.520 I think it was just the perfect beginning, just to 0:05:16.560 --> 0:05:19.360 get away from you know, all of the we were 0:05:19.440 --> 0:05:22.239 kids in Seattle, and Seattle can be real small towny. 0:05:22.720 --> 0:05:24.520 To start in a new place like Hawaii, it was 0:05:24.560 --> 0:05:27.080 just it was magic. That was the best decision we 0:05:27.120 --> 0:05:27.640 ever made. 0:05:28.600 --> 0:05:30.840 Had you been to Hawaii before. 0:05:31.440 --> 0:05:34.760 You know, my grandma was a genius and when she retired, 0:05:34.880 --> 0:05:40.120 she lived in the Seattle winters in Honolulu and lived 0:05:40.240 --> 0:05:43.160 like spring and summer here, so they call them snowbirds. 0:05:43.240 --> 0:05:45.840 And so I had gone over back and forth when 0:05:45.880 --> 0:05:48.160 I was like a little kid to see my grandma. 0:05:48.200 --> 0:05:50.400 We would spend Christmas there every once in a while. 0:05:50.680 --> 0:05:52.960 And there's a great deal, like we paid in state 0:05:52.960 --> 0:05:55.039 tuition if you live on the West Coast. And so 0:05:55.279 --> 0:05:58.200 I was not a super smart student back in the day. 0:05:58.240 --> 0:06:00.640 I just didn't care that much about school. I guess 0:06:00.640 --> 0:06:03.200 I was too busy, you know, being in love with 0:06:03.240 --> 0:06:06.400 my high school boyfriend or something. But I could like 0:06:06.480 --> 0:06:09.000 move to eastern Washington and go to college or move 0:06:09.080 --> 0:06:13.040 to Hawaii, and so I chose Hawaii. So I'm a, yeah, 0:06:13.200 --> 0:06:15.520 I'm a I love being near the water's brilliant. 0:06:16.080 --> 0:06:19.080 You're gonna have to be our tour guide. Yeah, that's 0:06:19.080 --> 0:06:20.119 our fiftieth state. 0:06:20.440 --> 0:06:22.680 We know you love to travel, and we love to travel, 0:06:22.760 --> 0:06:24.279 and we've done a lot of it for work, but 0:06:24.320 --> 0:06:25.520 we do a lot of it for pleasure. 0:06:25.600 --> 0:06:28.719 And I've been to forty nine of the fifty states. 0:06:28.800 --> 0:06:31.720 Jake's been to forty eight of the fifty states, and 0:06:32.000 --> 0:06:34.600 he still lacks Alaska, and neither of us have been 0:06:34.600 --> 0:06:35.160 to Hawaii. 0:06:35.200 --> 0:06:37.440 So we're that's going to be our fiftieth. 0:06:37.640 --> 0:06:40.719 Oh my gosh, okay, way to like bring it home though, 0:06:41.440 --> 0:06:44.839 like right, I mean the well done, Yes this is 0:06:44.920 --> 0:06:46.760 I know this is not that podcast, but I can. 0:06:46.839 --> 0:06:50.120 I'll send you a whole, like aggressively long list of 0:06:50.160 --> 0:06:51.400 things to do in places to go. 0:06:51.600 --> 0:06:54.080 It's beautifect Well, we're just going to talk you into 0:06:54.120 --> 0:06:54.760 coming with us. 0:06:54.960 --> 0:06:57.520 Yeah, I don't need to be talked into it. I don't. 0:06:57.640 --> 0:06:58.800 I don't listen in. 0:06:59.080 --> 0:07:02.000 So it's done. It's done. You just got to figure 0:07:02.000 --> 0:07:03.719 out when we're going to squeeze a laskin. 0:07:05.080 --> 0:07:08.679 So married at twenty and then when did y'all decide 0:07:08.720 --> 0:07:09.520 to grow your family. 0:07:10.840 --> 0:07:13.520 I think we were twenty five when we decided to 0:07:13.600 --> 0:07:16.960 have a baby. And again, right, we're kind of West 0:07:16.960 --> 0:07:19.560 Coast folks, and that feels so young now that I 0:07:19.600 --> 0:07:22.160 think about it, But I think because we've been together 0:07:22.200 --> 0:07:26.400 for so long, it just didn't feel it didn't feel wilder, 0:07:26.800 --> 0:07:30.040 you know, silly to have a kid. And so we were, 0:07:30.160 --> 0:07:32.440 you know, I think, as prepared as you can be, 0:07:32.560 --> 0:07:35.040 but like, you know, kind of poor. We were living 0:07:35.120 --> 0:07:38.320 in the Bay Area, just kind of living the lives 0:07:38.320 --> 0:07:41.600 of like people in our mid twenties in Oakland, California, 0:07:41.640 --> 0:07:44.760 and just decided to have a baby, and I had 0:07:44.800 --> 0:07:47.640 the best pregnancy and all these friends that didn't have 0:07:47.680 --> 0:07:50.920 any kids, and so we just like I had this 0:07:51.000 --> 0:07:54.120 whole crew of folks that just went on food adventures 0:07:54.120 --> 0:07:55.960 with me and ate all the fun things that I 0:07:56.000 --> 0:07:59.080 wanted to eat, and it wasn't really I felt so 0:07:59.360 --> 0:08:03.000 energized and excited when we were preparing for Mari to come. 0:08:03.080 --> 0:08:06.120 It was like such a special time waiting to meet her. 0:08:06.480 --> 0:08:09.120 And so I remember it's all intertwined in, you know, 0:08:09.200 --> 0:08:12.200 being twenty five, living in the Bay Area, having these 0:08:12.240 --> 0:08:15.440 fantastic friends, just kind of waiting for this little person 0:08:15.480 --> 0:08:16.480 to come join our crew. 0:08:16.840 --> 0:08:19.040 And it's so funny because parents always say that, oh, 0:08:19.040 --> 0:08:21.440 we're waiting for the right time to have It's never 0:08:21.520 --> 0:08:22.480 the right time, right. 0:08:22.720 --> 0:08:24.800 What were y'all doing professionally at that time? 0:08:25.640 --> 0:08:28.320 So I had a really cool job at the time. 0:08:28.560 --> 0:08:33.600 I was working for a small nonprofit adoption agency, which 0:08:33.679 --> 0:08:36.240 was like my first big kid job out of college. 0:08:36.400 --> 0:08:40.800 And I got to help look for families adoptive families 0:08:40.800 --> 0:08:43.720 for kids in foster care for the state of California. 0:08:43.960 --> 0:08:46.680 And I've adopted from foster care, and so it was 0:08:46.720 --> 0:08:51.600 super meaningful and full circle. And Jamie was working for 0:08:51.880 --> 0:08:54.160 like the Duty Free company, so that was his job 0:08:54.280 --> 0:08:58.800 in Hawaii, and transferred to San Francisco and was like 0:08:58.840 --> 0:09:01.720 a you know, liquor and wine manager, and you know, 0:09:01.800 --> 0:09:04.319 they weren't like our forever jobs, but they were good enough. 0:09:04.400 --> 0:09:06.360 And so we were, you know, just kind of chugging 0:09:06.400 --> 0:09:08.880 along with our jobs and living our best life in 0:09:08.880 --> 0:09:11.200 the Bay Area. I can't stress that enough fun place 0:09:11.240 --> 0:09:12.240 to be when you're young. 0:09:12.480 --> 0:09:16.079 Yeah, no kidding, or when you're old, or pretty much any. 0:09:16.000 --> 0:09:18.199 Time anytime, yeah, anytime. 0:09:18.480 --> 0:09:22.040 Yeah, So this beautiful bundle of joy comes along. 0:09:22.559 --> 0:09:23.520 Tell us about Mari. 0:09:24.440 --> 0:09:27.080 Oh my gosh. She came into the world like with 0:09:27.280 --> 0:09:31.280 such purpose. And you hear when you're pregnant that your 0:09:31.360 --> 0:09:33.679 kids are just going to be who they are. You 0:09:33.720 --> 0:09:36.880 don't really have much control. She came into the world 0:09:36.920 --> 0:09:40.320 with clarity and purpose, even as like a newborn. We 0:09:40.360 --> 0:09:42.880 remember looking at her and being like she's like staring 0:09:42.960 --> 0:09:46.840 us down, like she was just super present in the world, 0:09:47.000 --> 0:09:50.160 and it was so exciting to just get to know her. 0:09:50.320 --> 0:09:53.200 So she came on her own time, right when she 0:09:53.360 --> 0:09:55.920 wanted to. And you know, I stayed at home for 0:09:56.000 --> 0:09:58.760 like twenty two hours and had labored at home, and 0:09:58.800 --> 0:10:02.439 then she came two hours later and she just unfolded 0:10:02.480 --> 0:10:04.599 like a flower and just kind of looked at everybody, 0:10:05.000 --> 0:10:07.800 And I remember that so clearly, just her dark eyes 0:10:07.960 --> 0:10:11.240 just kind of checking us out. I tell this funny 0:10:11.240 --> 0:10:16.160 story because she loved to hear about being born later on, 0:10:16.400 --> 0:10:19.120 so she was super hyped to know how painful it 0:10:19.320 --> 0:10:21.679 was and how like she was, you know, like she 0:10:21.679 --> 0:10:24.520 she wanted me to tell her this story all the time. 0:10:24.600 --> 0:10:28.040 But all of our friends came to the hospital and 0:10:28.080 --> 0:10:30.200 were waiting, and I didn't know it either, And so 0:10:30.280 --> 0:10:32.640 when she was born, there was all these folks that 0:10:32.640 --> 0:10:34.680 were waiting to meet her, and so one after the 0:10:34.720 --> 0:10:36.800 other they came in and helped her and snuggled her. 0:10:36.880 --> 0:10:39.480 And later on in life, when she learned about like 0:10:39.520 --> 0:10:42.720 the Christmas story and like Baby Jesus, she learned about 0:10:42.760 --> 0:10:44.880 it and she said, oh, Baby Jesus was just like me. 0:10:45.080 --> 0:10:48.360 Everybody was waiting to meet Baby Jesus suit just like me. 0:10:48.520 --> 0:10:51.000 And I was like, like, you might have it like 0:10:51.080 --> 0:10:54.520 a little bit backwards, but you know, that's one interpretation 0:10:54.600 --> 0:10:57.120 of the story. But she just was captivating from the 0:10:57.160 --> 0:10:59.920 time that she arrived and I know I'm biased as 0:11:00.080 --> 0:11:02.480 her parent, but she just had a special energy. 0:11:06.800 --> 0:11:09.760 I'm curious to know the name Maury, where did that 0:11:09.800 --> 0:11:10.319 come from? 0:11:11.120 --> 0:11:14.679 So her full name is Marielle, and we called her 0:11:14.720 --> 0:11:18.600 mari for short. My mom's name is Mary Ellen, and 0:11:18.640 --> 0:11:21.520 so it's kind of an interpretation of a few family names. 0:11:21.720 --> 0:11:23.800 But she liked to be called Mariy for short, and 0:11:23.880 --> 0:11:26.160 we nicknamed her that, and then she kind of embraced 0:11:26.200 --> 0:11:28.280 it when she was able to tell people what she 0:11:28.320 --> 0:11:30.480 wanted to be called, which she wasn't shy about. 0:11:31.640 --> 0:11:34.480 She sounds like, I mean, not just a bundle of joy, 0:11:34.520 --> 0:11:37.120 but just like you said, she came in with clarity 0:11:37.160 --> 0:11:39.559 and purpose, just such a presence. 0:11:40.320 --> 0:11:44.240 That's yeahful. She certainly made her presence known even before 0:11:44.280 --> 0:11:46.160 she could talk. She just had a way of kind 0:11:46.160 --> 0:11:49.880 of peering into people's eyes and demanding their attention, even 0:11:49.880 --> 0:11:51.679 when she was just a tiny little thing. 0:11:52.480 --> 0:11:55.480 So how did she develop as she was growing older? 0:11:56.480 --> 0:12:00.560 She was ahead of all of her milestones for a while. 0:12:00.880 --> 0:12:04.080 And you know, you like pretend like that's not exciting, 0:12:04.120 --> 0:12:06.760 but it is. She rolled over really early and we 0:12:06.760 --> 0:12:10.720 were kind of proud of that. And I remember noticing 0:12:10.760 --> 0:12:15.240 one day that she couldn't roll over anymore. She was trying, 0:12:15.440 --> 0:12:18.439 but she couldn't. And you know, I'm a little bit 0:12:18.440 --> 0:12:21.280 of a like a nervous nelly or there's you know, 0:12:21.360 --> 0:12:24.120 a million ways to describe it. I remember just noting 0:12:24.160 --> 0:12:26.160 that and being really freaked out by that, and so 0:12:26.400 --> 0:12:29.600 taking her to her pediatrician, who I think tried not 0:12:29.640 --> 0:12:31.959 to freak us out but wanted to do for their 0:12:31.960 --> 0:12:34.400 workup and have her be seen by a physical therapists. 0:12:34.400 --> 0:12:36.960 It could be a range of like absolutely nothing to 0:12:37.040 --> 0:12:40.920 something horrifying, and so we you know, started on kind 0:12:40.960 --> 0:12:44.920 of a medical process totally unexpectedly, just when we noticed 0:12:44.920 --> 0:12:46.920 that she couldn't do the things that she wanted to 0:12:46.960 --> 0:12:50.160 do anymore. I think I was a little naive even 0:12:50.240 --> 0:12:53.160 going into that, of how scary her future could become. 0:12:53.920 --> 0:12:56.640 I think that's completely natural to be the nervous nelly, 0:12:56.720 --> 0:12:58.559 and especially first time mom. 0:12:58.760 --> 0:13:02.480 From the mall perspective, I think that's a first time 0:13:02.559 --> 0:13:05.800 parent thing. You know. I think you're just like, like 0:13:05.880 --> 0:13:08.880 I told you, like I would fall asleep sleeping at 0:13:08.880 --> 0:13:12.000 the end of the bed when Jackson was you know, 0:13:12.559 --> 0:13:15.839 because he was in the crip thing right at the 0:13:15.920 --> 0:13:17.840 end of the bed. And I would just like just 0:13:17.920 --> 0:13:20.000 watch them breathe and be at the end of the 0:13:20.040 --> 0:13:23.199 bed and then I'd wake up like that, Yeah, I 0:13:23.200 --> 0:13:26.679 think it's normal. There are thing they're ours, you know. 0:13:27.000 --> 0:13:29.600 Just like you said, it's never a perfect time. You 0:13:29.760 --> 0:13:32.120 think you could do everything in the world and think 0:13:32.160 --> 0:13:35.480 that you're like okay, I'm ready, so ready, and then 0:13:35.559 --> 0:13:39.319 that little human being blesses the world and you're like, 0:13:39.600 --> 0:13:40.880 oh my god. 0:13:41.679 --> 0:13:44.880 Yep, yep, everyone's the best parent in the world, like 0:13:44.920 --> 0:13:48.000 before they have children. It's this is a really interesting vibe, 0:13:48.040 --> 0:13:50.560 like you know all, you have, all the answers, you 0:13:50.640 --> 0:13:53.160 know everything, and then you have a kid and you're like, okay, 0:13:53.320 --> 0:13:55.520 I am I am humbled. I know nothing at all. 0:13:55.840 --> 0:13:57.079 Yeah, no doubt about it. 0:13:57.240 --> 0:14:00.960 Throw all the books, all the guides away, let me 0:14:01.040 --> 0:14:05.000 just do this thing. So when the docs started doing 0:14:05.800 --> 0:14:08.080 the research and started running some of the tests, what 0:14:08.160 --> 0:14:08.840 did you discover? 0:14:10.280 --> 0:14:13.560 So we were called into an appointment and met with 0:14:13.600 --> 0:14:16.480 her doctors who told us that she was diagnosed with 0:14:17.080 --> 0:14:21.720 a disease called spinal muscular atrophy and there's kind of 0:14:21.760 --> 0:14:24.960 a range of severity and it's one of those things 0:14:24.960 --> 0:14:28.080 that catching it earlier is the opposite of good. It's terrible. 0:14:28.480 --> 0:14:31.760 The earlier you find it, the more severe it is. 0:14:31.840 --> 0:14:36.239 It's when the symptoms present. I remember bits and pieces 0:14:36.320 --> 0:14:40.160 of the conversation, not that much, just because you know, 0:14:40.240 --> 0:14:43.560 everything kind of goes dark when you're confronted with something horrible. 0:14:44.200 --> 0:14:47.440 I remember him telling us like, there's nothing you can do, 0:14:47.680 --> 0:14:50.200 like take her home and love her because she's not 0:14:50.320 --> 0:14:52.280 going to live a long life. We lived in the 0:14:52.280 --> 0:14:54.920 Bay Area, we didn't have a car, and I remember like, 0:14:55.120 --> 0:14:57.280 instead of taking the bus back to our apartment like 0:14:57.320 --> 0:14:59.640 we always did, my husband and I we walked all 0:14:59.640 --> 0:15:02.680 the way home, just like, you know, kind of breathless, 0:15:02.840 --> 0:15:06.800 because it wasn't only that she had this disease that 0:15:06.800 --> 0:15:10.000 we didn't know anything about, but it was that there 0:15:10.080 --> 0:15:11.840 was no hope that was kind of put in front 0:15:11.840 --> 0:15:13.760 of us when we learned that there wasn't a thing 0:15:13.800 --> 0:15:16.320 that we could do or a medicine that we could take. 0:15:16.360 --> 0:15:19.320 It was just this is going to be awful. She's 0:15:19.360 --> 0:15:21.920 gonna die. There's nothing we can do about it. It 0:15:22.040 --> 0:15:24.600 just took my breath away and it didn't make sense 0:15:24.760 --> 0:15:28.200 because besides not being able to roll over anymore, she 0:15:28.320 --> 0:15:31.240 wasn't sick right. There wasn't like an illness in front 0:15:31.240 --> 0:15:33.720 of us. So she was just this like happy little 0:15:33.760 --> 0:15:35.840 five and a half or six month old baby doing 0:15:35.880 --> 0:15:38.480 what five and a half and six month old babies do. 0:15:39.240 --> 0:15:42.880 There was just this really intense dichotomy between like what 0:15:43.000 --> 0:15:45.440 we heard and what we were looking at, and I 0:15:46.080 --> 0:15:48.280 just it's hard to make sense of those two realities 0:15:48.320 --> 0:15:51.200 at the same time, because you know, kids don't stop, right, 0:15:51.200 --> 0:15:53.880 You got to like get up and do the thing 0:15:54.000 --> 0:15:56.520 the next day. And so it just didn't match up 0:15:56.560 --> 0:15:59.360 to where we were emotionally, which I think in reflection 0:15:59.520 --> 0:16:01.840 was a good thing maybe, but I think it made 0:16:01.880 --> 0:16:03.920 it hard in real time for sure. 0:16:04.840 --> 0:16:06.800 I Mean, I'm sitting here thinking like, how do you 0:16:06.880 --> 0:16:09.840 get this devastating news that you've just received and then 0:16:09.880 --> 0:16:13.240 you have to go on parenting right, acting like nothing's wrong, 0:16:13.400 --> 0:16:14.840 acting like everything's fine. 0:16:15.560 --> 0:16:17.520 How did you cope? 0:16:17.760 --> 0:16:22.040 I'm lucky to be surrounded by a lot of incredible people, 0:16:22.280 --> 0:16:26.360 and so I remember talking to my mom and I 0:16:26.400 --> 0:16:29.880 remember my friends coming over. I think she forced us 0:16:29.880 --> 0:16:34.320 to cope. She was just like the embodiment of joy, 0:16:34.680 --> 0:16:39.280 and so I just in reflection, had this like pit 0:16:39.440 --> 0:16:42.440 in my stomach for the longest time. But I think 0:16:42.480 --> 0:16:44.120 there was a part of me that just tried to 0:16:44.160 --> 0:16:47.600 set aside all the things that were to come, because 0:16:48.160 --> 0:16:49.640 you know, I had to get up, my husband had 0:16:49.640 --> 0:16:51.840 to go to work. I had a baby that wanted 0:16:51.840 --> 0:16:55.440 to engage, and I think demanded that of us. And 0:16:55.520 --> 0:16:58.240 so we really just tried to do the things that 0:16:58.280 --> 0:17:00.360 we were supposed to do, right, take her to story 0:17:00.400 --> 0:17:03.200 time and you know, get outside and read books. And 0:17:03.680 --> 0:17:06.680 I think early on got to a place where we 0:17:06.680 --> 0:17:08.679 were really going to soak in our time with her, 0:17:08.760 --> 0:17:11.960 right that was the easiest thing to come to, was, well, 0:17:12.040 --> 0:17:16.040 if she's gonna die, then we have to love her extra, 0:17:16.240 --> 0:17:19.320 we have to do all the things extra. And so 0:17:19.600 --> 0:17:22.760 we really did that and started celebrating her birthday every 0:17:22.800 --> 0:17:25.800 month instead of every year, just because we wanted to 0:17:25.840 --> 0:17:29.639 have celebrations, right, and she deserved to be celebrated, And 0:17:29.720 --> 0:17:32.280 so we just decided to start doing those things and 0:17:32.320 --> 0:17:35.040 do them all the time, because I think that was 0:17:35.080 --> 0:17:37.640 the only thing that we could control, right, was how 0:17:37.680 --> 0:17:40.919 we lived with her. Everything else was just happening, and 0:17:41.000 --> 0:17:43.520 so we're like, damn it, if everything else is happening 0:17:43.520 --> 0:17:46.000 and we have no control over that, then we're going 0:17:46.080 --> 0:17:49.280 to have some fun right now. And it wasn't easy, right, 0:17:49.320 --> 0:17:51.200 it wasn't perfect all the time, but it was so 0:17:51.359 --> 0:17:52.400 really a mission. 0:17:52.960 --> 0:17:57.360 You and Jamie clearly decided, Hey, let's grab a hold 0:17:57.400 --> 0:18:03.240 of our grit grace. We got to keep putting one 0:18:03.240 --> 0:18:06.639 foot in front of the other because this beautiful, precious 0:18:07.280 --> 0:18:13.880 angel doesn't know about this devastating news. And I think 0:18:13.960 --> 0:18:18.160 the doctor what sound advice? Go love her all the way, 0:18:18.440 --> 0:18:23.040 you know, And then you guys knowing, hey, what can 0:18:23.080 --> 0:18:25.479 we do? Because how much do all of us We 0:18:25.520 --> 0:18:28.560 were just talking about that this week. We forget to 0:18:28.680 --> 0:18:32.520 celebrate the small things like we forget, maybe not even 0:18:32.560 --> 0:18:34.600 so much forget, but it's like, eh, it's just a 0:18:34.640 --> 0:18:36.520 small thing, like we didn't win the lottery, so it's 0:18:36.520 --> 0:18:39.080 not the big of a deal, or like you know 0:18:39.080 --> 0:18:42.640 what I mean. And you guys were intentional about it. 0:18:43.080 --> 0:18:46.640 That had to play a role in having the internal 0:18:46.640 --> 0:18:50.240 fortitude to keep going next step. And I yeah, there's 0:18:50.280 --> 0:18:53.239 no manual on how to do that, Like there's no 0:18:53.480 --> 0:18:58.159 class you can take to give you the perseverance of 0:18:58.240 --> 0:19:01.920 perspective you need to do the loving the best you can. 0:19:02.400 --> 0:19:05.240 I think it was instinctual and you just you guys 0:19:05.359 --> 0:19:11.440 leaned in and just ran with it. And clearly Mari 0:19:11.680 --> 0:19:12.880 had no shortage of love. 0:19:13.640 --> 0:19:17.960 Clearly, Yeah, we talk about that right, how her life 0:19:18.119 --> 0:19:21.040 was hard in so many ways, and but that her 0:19:21.359 --> 0:19:25.400 experience was to be surrounded by like a huge community 0:19:25.440 --> 0:19:27.800 of people that loved her. Like she never met a stranger. 0:19:27.960 --> 0:19:30.040 You know. We'd be like on the bus in San 0:19:30.040 --> 0:19:32.680 Francisco and there'd be some really pissed off looking guy 0:19:32.760 --> 0:19:35.720 and she'd just be like smiling at him, you know, 0:19:36.080 --> 0:19:39.080 like like on the bus and I just say, sir, 0:19:39.280 --> 0:19:41.679 I'm sorry. She's gonna keep doing this until just like 0:19:41.960 --> 0:19:45.240 give her a little something and show me you alone. 0:19:45.440 --> 0:19:48.240 But she just really she had a way of kind 0:19:48.240 --> 0:19:51.640 of demanding and captivating folks. And I think the thing 0:19:51.680 --> 0:19:54.399 that happened that, you know, along the way, was she 0:19:54.520 --> 0:19:58.320 developed the language skills very early. And in reflection, you know, 0:19:58.320 --> 0:20:00.439