1
00:00:13,960 --> 00:00:19,840
Speaker 1: Personal fuels mean for these next two episodes, we're focused

2
00:00:19,880 --> 00:00:24,200
Speaker 1: on disabilities and rare diseases. First, I'm bringing on Madeline Cheney,

3
00:00:24,239 --> 00:00:26,880
Speaker 1: who is the host of The Rare Life podcast and

4
00:00:27,080 --> 00:00:29,680
Speaker 1: mom of a sweet kiddo who was born with a

5
00:00:29,800 --> 00:00:32,960
Speaker 1: rare disease. She's sharing her experience from the moment she

6
00:00:32,960 --> 00:00:36,279
Speaker 1: found out in pregnancy to where they are today. Then

7
00:00:36,320 --> 00:00:38,960
Speaker 1: next week, I'm bringing on Sarah Todd Hammer to share

8
00:00:39,000 --> 00:00:42,080
Speaker 1: her story. She's a three time published author, speaker, and

9
00:00:42,280 --> 00:00:45,360
Speaker 1: disability advocate. She has a very unique story and tells

10
00:00:45,400 --> 00:00:49,480
Speaker 1: her disability experience from a place of vulnerability and honesty.

11
00:00:50,040 --> 00:00:52,400
Speaker 1: I'm so excited to share both of their stories with you. Also,

12
00:00:52,600 --> 00:01:03,440
Speaker 1: let's get into it. Joining me today is Madeline Cheeney.

13
00:01:04,040 --> 00:01:06,680
Speaker 1: You host a podcast called The Rare Life for parents

14
00:01:07,000 --> 00:01:09,520
Speaker 1: of children with rare conditions, and I'm so excited to

15
00:01:09,520 --> 00:01:12,080
Speaker 1: talk to you today all about that, your story and everything.

16
00:01:12,160 --> 00:01:14,000
Speaker 1: So Hi, thanks for joining me.

17
00:01:14,520 --> 00:01:16,919
Speaker 2: Thanks so much for having me. I'm so excited to chat,

18
00:01:17,560 --> 00:01:17,920
Speaker 2: I know.

19
00:01:17,920 --> 00:01:21,800
Speaker 1: And I'm really excited to share your story, and I

20
00:01:21,840 --> 00:01:24,200
Speaker 1: think that's the best place to start. I want to

21
00:01:24,240 --> 00:01:28,280
Speaker 1: hear why even this podcast exists and the reason for

22
00:01:28,319 --> 00:01:31,679
Speaker 1: it from your perspective and what's happened in your life

23
00:01:31,720 --> 00:01:33,240
Speaker 1: to be where you are right now.

24
00:01:34,280 --> 00:01:38,160
Speaker 2: Yeah, So it all starts with my son, Kimball. He

25
00:01:38,280 --> 00:01:41,120
Speaker 2: is right now, he's almost seven, and we have an

26
00:01:41,120 --> 00:01:44,320
Speaker 2: older daughter, Wendy. So when I got pregnant with Kimball,

27
00:01:44,520 --> 00:01:48,280
Speaker 2: she was two, and we just thought we just have

28
00:01:48,360 --> 00:01:50,160
Speaker 2: a run of the mill life with run of the

29
00:01:50,200 --> 00:01:52,640
Speaker 2: mill kids, not including disabilities, because you don't really think

30
00:01:52,680 --> 00:01:56,680
Speaker 2: about that. And we had found out at that point

31
00:01:56,840 --> 00:01:59,920
Speaker 2: I was going in for my twenty week ultrasound, which

32
00:02:00,080 --> 00:02:02,880
Speaker 2: is where a lot of these stories start. Going into that,

33
00:02:02,960 --> 00:02:04,520
Speaker 2: I was like, Oh, it's going to be a super

34
00:02:04,560 --> 00:02:07,440
Speaker 2: boring appointment. There's we're not really going to learn anything

35
00:02:07,480 --> 00:02:10,000
Speaker 2: because we had accidentally found out he was a boy

36
00:02:10,040 --> 00:02:12,480
Speaker 2: at thirteen weeks, and so I was like, we're not

37
00:02:12,480 --> 00:02:14,880
Speaker 2: going to find out anything. So I told my husband, like,

38
00:02:14,880 --> 00:02:17,760
Speaker 2: you know what, don't come to the appointment. It'll be boring.

39
00:02:18,040 --> 00:02:20,480
Speaker 2: Just go to work. So this was the first appointment

40
00:02:20,560 --> 00:02:23,359
Speaker 2: he didn't go to with me, which in hindsight, I'm like, oh,

41
00:02:23,480 --> 00:02:26,480
Speaker 2: I wish he would have been there. But I brought

42
00:02:26,480 --> 00:02:30,440
Speaker 2: our two year old to that appointment, and as the

43
00:02:30,560 --> 00:02:34,600
Speaker 2: ultrasound tech was scanning me. I was like, oh, she's

44
00:02:34,639 --> 00:02:37,080
Speaker 2: being pretty quiet. That's funny. I'm used to like with

45
00:02:37,320 --> 00:02:40,080
Speaker 2: my daughter. It was a very lighthearted chatting without the

46
00:02:40,080 --> 00:02:41,959
Speaker 2: baby and are you excited and are you excited to

47
00:02:41,960 --> 00:02:44,560
Speaker 2: find out if it's a boy or girl? But it

48
00:02:44,639 --> 00:02:47,400
Speaker 2: was just silent, and I was like wanting to make

49
00:02:47,400 --> 00:02:50,200
Speaker 2: small talks. I was like so like asking her about

50
00:02:50,200 --> 00:02:51,960
Speaker 2: her job, and she was like, normally I work in

51
00:02:51,960 --> 00:02:55,959
Speaker 2: this high risk clinic downtown, but I come here once

52
00:02:55,960 --> 00:02:57,480
Speaker 2: a week. And I was like, oh my gosh, that

53
00:02:57,560 --> 00:03:00,200
Speaker 2: must be such a hard job to deliver hard news

54
00:03:00,200 --> 00:03:02,760
Speaker 2: to these moms. She was like, it's not my job.

55
00:03:02,840 --> 00:03:05,200
Speaker 2: The doctor does that. And I was like okay. And

56
00:03:05,200 --> 00:03:06,840
Speaker 2: I was like laying there and she's pretty hard to

57
00:03:06,880 --> 00:03:08,720
Speaker 2: get it's hard to get her talking, but she was.

58
00:03:09,480 --> 00:03:11,680
Speaker 2: While we were chatting about this, she was measuring and

59
00:03:11,720 --> 00:03:14,520
Speaker 2: remeasuring different things she was finding on there that were

60
00:03:14,560 --> 00:03:16,960
Speaker 2: definitely red flags, but she couldn't say anything because she's

61
00:03:17,000 --> 00:03:19,600
Speaker 2: not the doctor. I'm just laying there thinking everything's fine.

62
00:03:19,639 --> 00:03:21,679
Speaker 2: And then she was like, Okay, the doctor will look

63
00:03:21,680 --> 00:03:24,320
Speaker 2: at the ultra sound results and then we'll bring you

64
00:03:24,360 --> 00:03:26,960
Speaker 2: in to talk to him. I was like, that's weird.

65
00:03:27,040 --> 00:03:28,880
Speaker 2: Like with her daughter, he just called us a few

66
00:03:28,919 --> 00:03:30,760
Speaker 2: days later. I was like, Yep, everything was great and

67
00:03:30,800 --> 00:03:33,200
Speaker 2: that was that. So I was laying there thinking like,

68
00:03:33,919 --> 00:03:36,720
Speaker 2: could there be something going on? No, there's nothing wrong,

69
00:03:36,760 --> 00:03:39,640
Speaker 2: because I think for so many of us that do

70
00:03:39,760 --> 00:03:43,600
Speaker 2: have disabled children, it's you never really think it's gonna

71
00:03:43,600 --> 00:03:45,920
Speaker 2: happen to you. You're like, that happens to other people,

72
00:03:46,120 --> 00:03:49,120
Speaker 2: ohll never get it's not me. So I definitely was

73
00:03:49,200 --> 00:03:51,320
Speaker 2: in that camp at that point, or I thought I was.

74
00:03:52,000 --> 00:03:55,040
Speaker 2: And a little bit later they brought us into the

75
00:03:55,280 --> 00:03:58,720
Speaker 2: examination room with the doctor. I looked at his face

76
00:03:58,880 --> 00:04:00,240
Speaker 2: like trying to get a clue, and I was like,

77
00:04:00,280 --> 00:04:02,200
Speaker 2: oh no, like this is not good because he looked

78
00:04:02,240 --> 00:04:06,119
Speaker 2: pretty serious and he sat us down, or sat me down.

79
00:04:06,120 --> 00:04:09,200
Speaker 2: My daughter's toddling around, and he was like, it's hard

80
00:04:09,240 --> 00:04:11,680
Speaker 2: to know for sure, but we think your son has

81
00:04:11,720 --> 00:04:16,680
Speaker 2: down syndrome. And I just remember that those words they

82
00:04:16,800 --> 00:04:19,240
Speaker 2: changed my life forever. It just everything shifted. I felt

83
00:04:19,240 --> 00:04:21,000
Speaker 2: like the whole world was like teetering on its side.

84
00:04:21,000 --> 00:04:24,000
Speaker 2: I was like, what is happening right now? When I

85
00:04:24,000 --> 00:04:26,000
Speaker 2: sat in a daze while he was explaining the different

86
00:04:26,000 --> 00:04:29,720
Speaker 2: markers that looked like Down syndrome. For example, he had

87
00:04:29,760 --> 00:04:34,400
Speaker 2: short limbs and he didn't have a prominent nose bridge.

88
00:04:34,400 --> 00:04:36,039
Speaker 2: There just really wasn't any There's just like a little

89
00:04:36,040 --> 00:04:38,479
Speaker 2: tiny nub, which super cute. We have lots of pictures

90
00:04:38,480 --> 00:04:41,400
Speaker 2: of those. He was like, we're gonna test you and

91
00:04:41,640 --> 00:04:43,960
Speaker 2: we can find out if he has Down syndrome, and

92
00:04:44,040 --> 00:04:46,120
Speaker 2: we'll let you know within a week. And we were like.

93
00:04:46,160 --> 00:04:48,039
Speaker 2: I took my daughter and we were walking out, and

94
00:04:48,080 --> 00:04:50,919
Speaker 2: I just remember like feeling just like everything felt so surreal.

95
00:04:51,760 --> 00:04:55,679
Speaker 1: And I say, what was your first like he tells

96
00:04:55,720 --> 00:04:58,719
Speaker 1: you that, and what are your emotions and thoughts going

97
00:04:58,760 --> 00:05:01,360
Speaker 1: through your head? Because you did go into this being

98
00:05:01,400 --> 00:05:04,039
Speaker 1: like this is a normal appointment. My husband's not here. Ye,

99
00:05:04,240 --> 00:05:07,120
Speaker 1: holy crap, I just got really big news.

100
00:05:07,800 --> 00:05:10,000
Speaker 2: Yeah. I really just felt like my whole world had

101
00:05:10,000 --> 00:05:12,560
Speaker 2: flipped upside down. I just felt like, oh, this is

102
00:05:12,600 --> 00:05:14,240
Speaker 2: so hard, Like this is going to be such a

103
00:05:14,279 --> 00:05:17,280
Speaker 2: hard life. I think that was really what the first

104
00:05:17,279 --> 00:05:19,040
Speaker 2: thing that came to my mind was. And I remember

105
00:05:19,200 --> 00:05:21,800
Speaker 2: as I was processing and it was really like washing

106
00:05:21,839 --> 00:05:24,279
Speaker 2: over me. For the next few hours. After that appointment,

107
00:05:24,920 --> 00:05:27,839
Speaker 2: I realizing, oh my gosh, I've been writing letters to

108
00:05:27,880 --> 00:05:31,440
Speaker 2: this unborn child, and he'll never read them. So I

109
00:05:31,480 --> 00:05:34,840
Speaker 2: had these assumptions or the little knowledge that I had

110
00:05:34,839 --> 00:05:36,960
Speaker 2: about people with Down syndrome. I'm not saying that was

111
00:05:37,000 --> 00:05:39,039
Speaker 2: accurate or not, but that was what I was thinking of.

112
00:05:39,080 --> 00:05:40,800
Speaker 2: Oh my gosh, he'll never be able to read these

113
00:05:41,560 --> 00:05:44,599
Speaker 2: and I will never be empty nesters. That was another

114
00:05:44,640 --> 00:05:47,159
Speaker 2: thought that immediately came to my mind, of this lifelong care.

115
00:05:47,320 --> 00:05:50,160
Speaker 2: We will never just this life that I expected, This

116
00:05:50,200 --> 00:05:52,440
Speaker 2: trajectory that we felt like we were on was suddenly

117
00:05:52,480 --> 00:05:56,279
Speaker 2: shifted completely and all I saw and my future really

118
00:05:56,400 --> 00:05:59,360
Speaker 2: was hardship. I was like, this is gonna be so hard,

119
00:05:59,440 --> 00:06:01,320
Speaker 2: It's gonna be so much of work, and I'm never

120
00:06:01,360 --> 00:06:04,760
Speaker 2: going to be done. And I think I'm naturally a

121
00:06:04,800 --> 00:06:07,599
Speaker 2: pretty independent person, and so the idea of having a

122
00:06:07,680 --> 00:06:10,600
Speaker 2: child is dependent on you for life was really hard

123
00:06:10,600 --> 00:06:12,040
Speaker 2: for me to wrap my head around.

124
00:06:13,000 --> 00:06:15,480
Speaker 1: Yeah, And I don't think a lot of people consider that,

125
00:06:15,520 --> 00:06:18,479
Speaker 1: because you're really thinking about these first few moments and

126
00:06:18,600 --> 00:06:20,760
Speaker 1: just like getting the news and the kind of shock

127
00:06:20,760 --> 00:06:23,080
Speaker 1: of it all to your point, nobody goes into it

128
00:06:23,160 --> 00:06:27,000
Speaker 1: expecting that it's going to happen to them, and then

129
00:06:27,880 --> 00:06:30,440
Speaker 1: they also as they start playing it out on their head,

130
00:06:30,720 --> 00:06:34,800
Speaker 1: have this thought of, oh, this is a child that

131
00:06:34,839 --> 00:06:38,839
Speaker 1: will likely need my help for life in one way

132
00:06:38,920 --> 00:06:41,720
Speaker 1: or another. Even if they become independent, even if all

133
00:06:41,760 --> 00:06:43,600
Speaker 1: these things play out, there's still always going to be

134
00:06:43,680 --> 00:06:47,200
Speaker 1: probably a need for me. And that has to be

135
00:06:47,320 --> 00:06:51,320
Speaker 1: terrifying in just itself alone, because probably what you were

136
00:06:52,279 --> 00:06:56,200
Speaker 1: imagining your future after having kids feels like that gets

137
00:06:56,200 --> 00:06:56,960
Speaker 1: taken away from you.

138
00:06:58,080 --> 00:07:01,159
Speaker 2: Yeah, yeah, for sure, there like grieving this whole life

139
00:07:01,200 --> 00:07:02,760
Speaker 2: I thought we were going to have and I thought

140
00:07:02,760 --> 00:07:06,800
Speaker 2: he would have and oh there was something that you

141
00:07:07,000 --> 00:07:09,440
Speaker 2: just said. I think like one of the reasons too

142
00:07:09,480 --> 00:07:11,720
Speaker 2: that we didn't this wasn't even on our radar, is

143
00:07:11,720 --> 00:07:14,440
Speaker 2: that we didn't know anyone with a disabled child. Yes,

144
00:07:14,480 --> 00:07:16,720
Speaker 2: I could, like my brain started bringing up, like, oh,

145
00:07:16,840 --> 00:07:19,120
Speaker 2: I think didn't this one cousin once say that, like, oh,

146
00:07:19,280 --> 00:07:20,920
Speaker 2: I think she has a disabled child. But it was

147
00:07:20,920 --> 00:07:23,560
Speaker 2: people that I was not close to. So no one

148
00:07:23,560 --> 00:07:26,560
Speaker 2: in my immediate circles, none of my family members, none

149
00:07:26,600 --> 00:07:29,680
Speaker 2: of my close friends had disabled children, And so I

150
00:07:29,720 --> 00:07:32,480
Speaker 2: think that was one reason that I wasn't even you know,

151
00:07:32,520 --> 00:07:35,000
Speaker 2: it wasn't on my radar at all. But that also

152
00:07:35,120 --> 00:07:39,240
Speaker 2: meant it was so lonely. I felt suddenly just so

153
00:07:39,360 --> 00:07:41,680
Speaker 2: alone in this, and I was like, no one understands.

154
00:07:41,800 --> 00:07:44,520
Speaker 2: I called my mom and I called my siblings, and

155
00:07:44,560 --> 00:07:46,240
Speaker 2: I was like, I was like, oh, they think he

156
00:07:46,280 --> 00:07:49,480
Speaker 2: has down syndrome. And the things that they said in

157
00:07:49,520 --> 00:07:52,400
Speaker 2: response it wasn't bad. I'm sure I would have said

158
00:07:52,400 --> 00:07:55,320
Speaker 2: the same thing, but it was just very clear to

159
00:07:55,360 --> 00:07:57,520
Speaker 2: me if they have no idea what this is like.

160
00:07:58,120 --> 00:08:00,440
Speaker 2: And again, that was just such a terrifying thought. I

161
00:08:00,480 --> 00:08:02,720
Speaker 2: was very young too, I was twenty four years old,

162
00:08:03,360 --> 00:08:06,120
Speaker 2: and so I was just, I don't know, very naive

163
00:08:06,240 --> 00:08:08,160
Speaker 2: to hard things in life, and so this was really

164
00:08:08,200 --> 00:08:10,800
Speaker 2: a very rude awakening to like things that can be

165
00:08:10,840 --> 00:08:13,520
Speaker 2: really difficult in life and complicated.

166
00:08:14,240 --> 00:08:16,720
Speaker 1: Okay, and now I'm like placing this and this is

167
00:08:17,360 --> 00:08:19,760
Speaker 1: just so crazy to me. Are you I'd never ask age,

168
00:08:19,800 --> 00:08:21,680
Speaker 1: but I'm just like, are you thirty one?

169
00:08:22,160 --> 00:08:23,120
Speaker 2: Yeah? I am thirty one.

170
00:08:23,720 --> 00:08:27,240
Speaker 1: I'm thirty one, and I'm sitting here and I'm not married,

171
00:08:27,280 --> 00:08:31,960
Speaker 1: i don't have kids, but holy crap, that's the first

172
00:08:31,960 --> 00:08:34,280
Speaker 1: thing that comes to my mind. Not only is this

173
00:08:34,360 --> 00:08:36,920
Speaker 1: happening and this is big news, and yes, you have

174
00:08:37,040 --> 00:08:39,680
Speaker 1: another child, so it wasn't like this was a okay,

175
00:08:39,720 --> 00:08:41,920
Speaker 1: we were playing, this is part of the goal, but

176
00:08:42,720 --> 00:08:47,520
Speaker 1: you were so young for that experience. Yeah, was that

177
00:08:47,600 --> 00:08:50,280
Speaker 1: another thing that was going through your head. I'm really young,

178
00:08:50,559 --> 00:08:53,760
Speaker 1: and I don't think I have the preparation to do

179
00:08:54,000 --> 00:08:55,440
Speaker 1: what this is going to require of me.

180
00:08:56,160 --> 00:08:58,560
Speaker 2: For sure. That was one of my first thoughts. Honestly,

181
00:08:58,600 --> 00:09:01,679
Speaker 2: it was I'm too young for a child with Down syndrome,

182
00:09:01,720 --> 00:09:03,880
Speaker 2: because that's what you hear, It's like the advanced maternal

183
00:09:03,920 --> 00:09:06,079
Speaker 2: age and all of that. I was like, I'm twenty

184
00:09:06,120 --> 00:09:07,720
Speaker 2: four years old, like this is not supposed to be

185
00:09:07,720 --> 00:09:09,840
Speaker 2: happening to me right now, which of course it does

186
00:09:09,840 --> 00:09:12,240
Speaker 2: happen to younger people. But that was like this assumption

187
00:09:12,400 --> 00:09:14,880
Speaker 2: too that I felt almost this like immunity because I

188
00:09:14,920 --> 00:09:17,719
Speaker 2: was so young. And then yeah, I mean there were

189
00:09:17,760 --> 00:09:20,720
Speaker 2: so many times throughout our son's life too, as after

190
00:09:20,760 --> 00:09:23,320
Speaker 2: he was born and at with different things that happened

191
00:09:23,320 --> 00:09:27,320
Speaker 2: that were really hard. I remember thinking like I'm too

192
00:09:27,360 --> 00:09:29,480
Speaker 2: young for this, Like I'm way too young for this,

193
00:09:29,600 --> 00:09:33,400
Speaker 2: and I know, life just happens, right, it's not it's

194
00:09:33,400 --> 00:09:36,520
Speaker 2: indifferent to your age and your experience. But it's interesting

195
00:09:36,520 --> 00:09:38,520
Speaker 2: because I was talking to my mom about this recently,

196
00:09:38,559 --> 00:09:40,520
Speaker 2: and she was like, Oh, I had that thought a lot.

197
00:09:40,640 --> 00:09:42,880
Speaker 2: She's way too young to have to go through these things.

198
00:09:42,920 --> 00:09:45,080
Speaker 2: And so I do feel like for being thirty one

199
00:09:45,200 --> 00:09:47,559
Speaker 2: years old, I relate a lot with people who are older,

200
00:09:47,679 --> 00:09:49,000
Speaker 2: like I have a lot of my best friends are

201
00:09:49,040 --> 00:09:52,319
Speaker 2: forties and their fifties, because I think like the life

202
00:09:52,360 --> 00:09:55,199
Speaker 2: experience that I've had up to this point have made

203
00:09:55,280 --> 00:09:57,840
Speaker 2: me grow up more than I would have. Undoubtedly I've

204
00:09:57,920 --> 00:09:59,760
Speaker 2: grown up a lot more than I would have without Kimball,

205
00:09:59,760 --> 00:10:00,600
Speaker 2: and are experiences with.

206
00:10:00,600 --> 00:10:04,360
Speaker 1: Him, Yeah, absolutely, And I could imagine that would just

207
00:10:04,520 --> 00:10:07,640
Speaker 1: gosh send you on a completely different journey on so

208
00:10:07,720 --> 00:10:11,720
Speaker 1: many levels. When you go back and you tell your

209
00:10:11,760 --> 00:10:14,560
Speaker 1: husband this, that first conversation that you guys are having,

210
00:10:15,720 --> 00:10:19,080
Speaker 1: is he reacting how you expected? What was that conversation

211
00:10:19,720 --> 00:10:25,280
Speaker 1: like in those first few days moments, He's very even keeled,

212
00:10:25,360 --> 00:10:27,760
Speaker 1: That's one way I describe him. So he's very much

213
00:10:27,840 --> 00:10:31,240
Speaker 1: like the stoic, like stable one, and I'm not. I'm

214
00:10:31,280 --> 00:10:35,720
Speaker 1: like more of the like passionate, reactive, over dramatic person

215
00:10:35,800 --> 00:10:36,840
Speaker 1: in our relationship.

216
00:10:36,960 --> 00:10:39,079
Speaker 2: And so when I called him, I buckled in. My

217
00:10:39,200 --> 00:10:41,240
Speaker 2: daughter was shaking hands and as soon as I came

218
00:10:41,240 --> 00:10:43,600
Speaker 2: out of the office, I was sobbing, and so I,

219
00:10:43,720 --> 00:10:45,840
Speaker 2: like with trembling fingers, tried to call him as I

220
00:10:45,840 --> 00:10:49,360
Speaker 2: got into the front seat to tell him this, and

221
00:10:49,400 --> 00:10:51,000
Speaker 2: when he answered, it took me a little bit to

222
00:10:51,080 --> 00:10:54,280
Speaker 2: compose myself enough to tell him, and so he kind

223
00:10:54,280 --> 00:10:55,960
Speaker 2: of sat there, Oh, my gosh, what is she about

224
00:10:55,960 --> 00:10:57,600
Speaker 2: to say, because he knew I was at this appointment,

225
00:10:58,240 --> 00:11:00,640
Speaker 2: And I was like, they think that they think that

226
00:11:00,720 --> 00:11:02,800
Speaker 2: Kimball has Down syndrome, because at that point we'd already

227
00:11:02,880 --> 00:11:04,520
Speaker 2: named him, we already knew he was a boy and everything.

228
00:11:04,559 --> 00:11:08,120
Speaker 2: We were really connected to him. And he was like, oh,

229
00:11:08,200 --> 00:11:09,560
Speaker 2: I thought you were going to tell me that you

230
00:11:09,559 --> 00:11:12,560
Speaker 2: had a miscarriage, because that was what was going through

231
00:11:12,640 --> 00:11:15,440
Speaker 2: his head hearing me sobbing like this. And then I

232
00:11:15,600 --> 00:11:17,880
Speaker 2: said something that I feel a lot of shame about now,

233
00:11:17,920 --> 00:11:20,160
Speaker 2: but I have also a lot of self compassion for

234
00:11:20,280 --> 00:11:21,760
Speaker 2: what I was going through at that point. But I

235
00:11:21,840 --> 00:11:25,760
Speaker 2: said to him, that would have been easier. And I

236
00:11:25,800 --> 00:11:28,200
Speaker 2: think at that point I was thinking about if we

237
00:11:28,240 --> 00:11:30,520
Speaker 2: had lost him, I would go through the grief and

238
00:11:30,600 --> 00:11:32,840
Speaker 2: it would be really traumatic and hard, and then we

239
00:11:32,840 --> 00:11:37,319
Speaker 2: would move forward, which in hindsight, now, I don't think

240
00:11:37,320 --> 00:11:39,200
Speaker 2: that's how. It would not have been that simple. It'd

241
00:11:39,200 --> 00:11:40,920
Speaker 2: have been a huge loss. I was already twenty weeks

242
00:11:40,920 --> 00:11:43,360
Speaker 2: at this point, But that's what that's how I viewed it.

243
00:11:43,440 --> 00:11:45,840
Speaker 2: Like we would grieve it, we'd be really upset, and

244
00:11:45,880 --> 00:11:47,599
Speaker 2: then we'd have another child, and then that child to

245
00:11:47,679 --> 00:11:50,760
Speaker 2: be like quote unquote normal whatever that means, and then

246
00:11:51,000 --> 00:11:53,640
Speaker 2: independent and all the things. But this life that we

247
00:11:53,720 --> 00:11:56,160
Speaker 2: have with our son Kimball is going to be so

248
00:11:56,280 --> 00:11:59,080
Speaker 2: difficult and it's going to be again this lifelong thing.

249
00:11:59,120 --> 00:12:01,439
Speaker 2: And at least that's how I was perceiving at that point.

250
00:12:02,040 --> 00:12:05,480
Speaker 2: And yeah, I think he felt relief that wasn't that

251
00:12:05,600 --> 00:12:08,520
Speaker 2: we didn't lose him, and then he remained like this

252
00:12:08,720 --> 00:12:11,320
Speaker 2: the stable one in our relationship. And it's really interesting.

253
00:12:11,360 --> 00:12:15,120
Speaker 2: We've talked about it since about and with several other

254
00:12:15,200 --> 00:12:17,960
Speaker 2: dads too. We actually did a whole episode about the

255
00:12:18,520 --> 00:12:20,560
Speaker 2: kind of the dad perspective and how that's different than

256
00:12:20,559 --> 00:12:23,880
Speaker 2: the mom's when you have disabled and medically complex children,

257
00:12:24,040 --> 00:12:26,960
Speaker 2: and it was pretty unanimous among them. You feel like

258
00:12:27,000 --> 00:12:29,199
Speaker 2: you have to be the strong one because of cultural

259
00:12:29,360 --> 00:12:32,560
Speaker 2: and societal norms of I have to keep things together,

260
00:12:32,720 --> 00:12:34,360
Speaker 2: I need to make sure the mom's okay and the

261
00:12:34,400 --> 00:12:37,160
Speaker 2: baby's okay, and so really shoving down their own feelings

262
00:12:37,200 --> 00:12:39,960
Speaker 2: and emotions and not feeling safe enough to struggle. I

263
00:12:39,960 --> 00:12:41,800
Speaker 2: felt like I could struggle. I had all the permission

264
00:12:41,840 --> 00:12:44,000
Speaker 2: to struggle, and I don't think he had that same

265
00:12:44,440 --> 00:12:47,200
Speaker 2: safety And I feel sad about that now.

266
00:12:48,559 --> 00:12:51,360
Speaker 1: Well. And it's true though, because in the very beginning

267
00:12:51,440 --> 00:12:54,280
Speaker 1: stages from all of my mom friends, I've heard you

268
00:12:54,360 --> 00:12:57,880
Speaker 1: have this just this such emotional connection because you're growing

269
00:12:57,920 --> 00:13:00,760
Speaker 1: a human inside of you, and it's a different experience

270
00:13:00,760 --> 00:13:04,000
Speaker 1: than the men are already having, So I could imagine

271
00:13:04,520 --> 00:13:08,319
Speaker 1: that experience would stay that way, especially given a state

272
00:13:08,480 --> 00:13:10,800
Speaker 1: like this. So that makes sense, like in my brain

273
00:13:10,840 --> 00:13:14,559
Speaker 1: at least of the experiences that people have. But it's

274
00:13:14,559 --> 00:13:19,160
Speaker 1: also not fair, right, because dads also deserve to have

275
00:13:19,200 --> 00:13:23,679
Speaker 1: those emotions and feelings about a very life altering moment.

276
00:13:25,160 --> 00:13:27,480
Speaker 1: But and it hurts you in a way that they

277
00:13:27,559 --> 00:13:30,160
Speaker 1: feel like they have to be that way. So I'm

278
00:13:30,200 --> 00:13:32,400
Speaker 1: happy that you were giving them the space to show that.

279
00:13:32,440 --> 00:13:37,360
Speaker 1: So hopefully future dads in the situation can feel something

280
00:13:37,400 --> 00:13:39,720
Speaker 1: for that and not feel like they have to be strong,

281
00:13:40,240 --> 00:13:43,840
Speaker 1: because I think at least. I would imagine for both

282
00:13:43,840 --> 00:13:45,480
Speaker 1: of you guys, it would take both of you to

283
00:13:45,520 --> 00:13:47,040
Speaker 1: be strong, not just one of you.

284
00:13:48,000 --> 00:13:49,880
Speaker 2: Yeah, for sure, I think it would have been a

285
00:13:49,920 --> 00:13:52,320
Speaker 2: lot healthier than it wouldn't have been. Oh, I'm the

286
00:13:52,320 --> 00:13:55,440
Speaker 2: one who freaks out and processes everything really messy, and

287
00:13:55,480 --> 00:13:58,920
Speaker 2: you just are it's there, it's all bottled up inside. Right.

288
00:13:58,960 --> 00:14:01,120
Speaker 2: It's not like they aren't experience those emotions as just

289
00:14:02,440 --> 00:14:04,840
Speaker 2: they can't fully if you don't feel like you're allowed to.

290
00:14:07,800 --> 00:14:10,360
Speaker 1: I want to know now to So this happens, this

291
00:14:10,480 --> 00:14:15,480
Speaker 1: conversation happens, and obviously you have him and life is changed.

292
00:14:15,480 --> 00:14:19,560
Speaker 1: So did he end up having what they expected or

293
00:14:19,680 --> 00:14:23,400
Speaker 1: was it something else? What happened as that course changed?

294
00:14:23,400 --> 00:14:27,440
Speaker 1: Because also they're predicting this and based on numbers and

295
00:14:27,520 --> 00:14:30,000
Speaker 1: what they're seeing on sonograms, and I know that can

296
00:14:30,120 --> 00:14:33,440
Speaker 1: change as they're born and other things developed. So what

297
00:14:33,640 --> 00:14:35,440
Speaker 1: happened after he was born?

298
00:14:36,480 --> 00:14:39,560
Speaker 2: Actually it was a week later after this ultrasound that

299
00:14:39,720 --> 00:14:42,640
Speaker 2: the test results came back negative for Down syndrome. And

300
00:14:42,680 --> 00:14:44,600
Speaker 2: so I think this really set the precedents too of

301
00:14:44,640 --> 00:14:47,160
Speaker 2: a life just full of roller coasters, and really that's

302
00:14:47,200 --> 00:14:49,000
Speaker 2: I think that's one thing that you've just surrendered to

303
00:14:49,200 --> 00:14:50,680
Speaker 2: once you get used to one idea and then all

304
00:14:50,720 --> 00:14:52,320
Speaker 2: of a sudden it's a whole different thing, and just

305
00:14:52,360 --> 00:14:53,920
Speaker 2: being like, you know what, this is how it's going

306
00:14:54,000 --> 00:14:55,840
Speaker 2: to be from here on out. And that really was

307
00:14:55,920 --> 00:14:57,560
Speaker 2: the case for us for the first few years of

308
00:14:57,560 --> 00:15:00,600
Speaker 2: his life too. But we because it came back negative,

309
00:15:00,880 --> 00:15:04,080
Speaker 2: the doctor was like, it's probably something very rare because

310
00:15:04,120 --> 00:15:07,280
Speaker 2: it tested for like the twelve or twenty round whatever

311
00:15:07,360 --> 00:15:10,760
Speaker 2: number it is most common abnormalities, you know, in birth.

312
00:15:10,760 --> 00:15:12,640
Speaker 2: And at that point we were launched into the world

313
00:15:12,680 --> 00:15:15,040
Speaker 2: of rare and that was really scary to be like, Okay,

314
00:15:15,240 --> 00:15:18,120
Speaker 2: like I first, I got launched into this like mini

315
00:15:18,440 --> 00:15:22,240
Speaker 2: community subset of people, or like the down syndrome community,

316
00:15:22,320 --> 00:15:23,800
Speaker 2: or there are actually a lot of like within the

317
00:15:23,840 --> 00:15:27,800
Speaker 2: world of disability that's a very prevalent, robust community. And

318
00:15:27,840 --> 00:15:30,240
Speaker 2: so then to suddenly be like, oh, actually you don't

319
00:15:30,240 --> 00:15:32,160
Speaker 2: belong here. You're gonna we're gonna shuffle you out into

320
00:15:32,160 --> 00:15:35,360
Speaker 2: this other corner that's even more isolated from culture and

321
00:15:35,400 --> 00:15:38,600
Speaker 2: your friends and everyone around you. And during the course

322
00:15:38,680 --> 00:15:41,320
Speaker 2: of the next few months of pregnancy with him, we

323
00:15:41,400 --> 00:15:43,920
Speaker 2: had lots and lots of ultra sounds. So I got

324
00:15:43,920 --> 00:15:46,880
Speaker 2: a lot of baby pictures of him, which was one perk.

325
00:15:47,120 --> 00:15:49,440
Speaker 2: But they were like, we think he has this really

326
00:15:49,520 --> 00:15:53,560
Speaker 2: rare condition. It's called condor displaysia punk Tata xling type one,

327
00:15:54,120 --> 00:15:55,720
Speaker 2: which is just a little general.

328
00:15:55,600 --> 00:15:59,000
Speaker 1: Because you're like, okay, so what does that mean exactly?

329
00:15:59,080 --> 00:16:01,720
Speaker 2: And if you translate the word over directly, one of

330
00:16:01,720 --> 00:16:04,160
Speaker 2: the things is that it says people with this syndrome

331
00:16:04,200 --> 00:16:06,640
Speaker 2: they have polka dots in their joints, which is what

332
00:16:06,680 --> 00:16:09,600
Speaker 2: you can see in ultrasound. It doesn't really affect them

333
00:16:10,000 --> 00:16:12,560
Speaker 2: like functionally, but that was one way they're like, oh,

334
00:16:12,600 --> 00:16:14,320
Speaker 2: this is a marker for the syndrome, and then he's

335
00:16:14,360 --> 00:16:18,120
Speaker 2: checking all these other boxes. And so that diagnosis ended

336
00:16:18,160 --> 00:16:20,800
Speaker 2: up being confirmed after he was born, and so we

337
00:16:20,880 --> 00:16:22,920
Speaker 2: learned that there were one hundred and twenty five other

338
00:16:23,120 --> 00:16:25,760
Speaker 2: people in the world with confirmed cases of this, and

339
00:16:25,840 --> 00:16:30,080
Speaker 2: so ultra rare, very little ever in the year or

340
00:16:31,320 --> 00:16:38,200
Speaker 2: I think ever documented. Wow, And so yeah, and we've

341
00:16:38,280 --> 00:16:41,480
Speaker 2: learned later too, because it's with these rare diseases you

342
00:16:41,600 --> 00:16:44,160
Speaker 2: find out more. In the best cases, you learn more

343
00:16:44,200 --> 00:16:47,400
Speaker 2: and more as time goes on, and we've learned recently

344
00:16:47,520 --> 00:16:50,840
Speaker 2: with new research that's come up that oftentimes these babies

345
00:16:50,880 --> 00:16:54,480
Speaker 2: die before they're born due to brain bleeds that often

346
00:16:54,520 --> 00:16:57,880
Speaker 2: are not caught before birth, and he luckily did not

347
00:16:58,040 --> 00:17:01,240
Speaker 2: have that symptom, and that's why he was born alive.

348
00:17:01,800 --> 00:17:03,560
Speaker 2: But we knew that there was a high chance of

349
00:17:03,600 --> 00:17:06,080
Speaker 2: them of him passing away before birth, and so that

350
00:17:06,240 --> 00:17:10,520
Speaker 2: was also this whole other layer where before it was like, oh, disabilities,

351
00:17:10,640 --> 00:17:12,600
Speaker 2: that's really hard and that's different, and it has the

352
00:17:12,640 --> 00:17:14,560
Speaker 2: stigma and I'm not sure how to help him and

353
00:17:14,600 --> 00:17:16,040
Speaker 2: get all the support we need and it'll be so

354
00:17:16,119 --> 00:17:18,959
Speaker 2: much work for me. But then and oftentimes I do

355
00:17:19,040 --> 00:17:22,680
Speaker 2: have heart abnormalities and that's scary too. But it really

356
00:17:22,800 --> 00:17:25,720
Speaker 2: wasn't the medical side really wasn't a part of this yet.

357
00:17:25,760 --> 00:17:29,680
Speaker 2: And then when we got that diagnosis, it was like, oh,

358
00:17:29,920 --> 00:17:32,560
Speaker 2: we are going to help this child fight for his life.

359
00:17:32,560 --> 00:17:35,960
Speaker 2: That's what this is. And so we immediately had very

360
00:17:36,040 --> 00:17:38,200
Speaker 2: specialists that were meeting with us and talking about the

361
00:17:38,200 --> 00:17:40,280
Speaker 2: different interventions they would do once he was born and

362
00:17:40,320 --> 00:17:43,280
Speaker 2: what it would likely be like. And they were told

363
00:17:43,359 --> 00:17:45,840
Speaker 2: us we had to deliver at the specific hospital because

364
00:17:45,840 --> 00:17:48,000
Speaker 2: it had the highest level nik you that was most

365
00:17:48,040 --> 00:17:50,600
Speaker 2: likely to help him survive, and so it just really

366
00:17:50,680 --> 00:17:52,240
Speaker 2: and again like I just felt, I was like, I'm

367
00:17:52,280 --> 00:17:54,760
Speaker 2: so young. I'm so young to be dealing with this

368
00:17:54,800 --> 00:17:57,359
Speaker 2: stuff like this is so scary something you never think

369
00:17:57,400 --> 00:17:59,320
Speaker 2: you're going to be facing in your life.

370
00:18:00,119 --> 00:18:04,480
Speaker 1: Yeah, you're getting all of this information, which I would

371
00:18:04,560 --> 00:18:07,600
Speaker 1: think is very overwhelming because you don't understand any of it.

372
00:18:07,680 --> 00:18:09,919
Speaker 1: You're going to specialists, You're probably dealing with a lot

373
00:18:09,960 --> 00:18:12,040
Speaker 1: of medical bills that you weren't prepared for in the

374
00:18:12,080 --> 00:18:16,240
Speaker 1: first place. You are being talked to about something that

375
00:18:16,280 --> 00:18:18,399
Speaker 1: you're growing inside of you that may not make it,

376
00:18:18,440 --> 00:18:20,160
Speaker 1: but if it does, it may not make it later.

377
00:18:20,280 --> 00:18:24,040
Speaker 1: And you're sitting here just having so many variations. You

378
00:18:24,160 --> 00:18:27,840
Speaker 1: mentioned the roller coaster, but Madeline, this might be the bumpiest,

379
00:18:27,840 --> 00:18:31,359
Speaker 1: like the roller coaster that doesn't have any screws, is

380
00:18:31,359 --> 00:18:33,440
Speaker 1: what it feels like the way that you're describing it.

381
00:18:33,480 --> 00:18:39,280
Speaker 1: And to be two people who are experiencing that along

382
00:18:39,280 --> 00:18:41,840
Speaker 1: with already having a child that you're supposed to be

383
00:18:41,880 --> 00:18:47,720
Speaker 1: loving and caring for. I just I want to recognize

384
00:18:49,080 --> 00:18:53,200
Speaker 1: how much strength all of you have to have went

385
00:18:53,240 --> 00:18:57,160
Speaker 1: through that, just the emotional turmoil that you probably went

386
00:18:57,200 --> 00:19:01,360
Speaker 1: through throughout the entire beginning until you the reward of

387
00:19:01,440 --> 00:19:04,720
Speaker 1: having him in your life. It was like you had

388
00:19:04,760 --> 00:19:07,240
Speaker 1: to emotionally go through so much just to get there.

389
00:19:08,400 --> 00:19:11,520
Speaker 2: Yeah. Yeah, looking back at it, I'm like, oh yeah,

390
00:19:11,560 --> 00:19:14,600
Speaker 2: like I can see where, like you do, you need

391
00:19:14,600 --> 00:19:16,639
Speaker 2: a lot of resilience to get through things like that.

392
00:19:16,680 --> 00:19:18,159
Speaker 2: But I think at the time it just felt like

393
00:19:18,240 --> 00:19:21,000
Speaker 2: being beaten to a bloody pulp of I can't handle this,

394
00:19:21,040 --> 00:19:24,000
Speaker 2: I can't handle this, and just thing after thing that

395
00:19:24,160 --> 00:19:26,960
Speaker 2: was so beyond my capacity, because it really was. But

396
00:19:27,040 --> 00:19:30,040
Speaker 2: then hindsight's twenty twenty, and I can be like, okay,

397
00:19:30,080 --> 00:19:33,800
Speaker 2: that that was so incredibly painful, But I also can

398
00:19:33,880 --> 00:19:37,159
Speaker 2: recognize qualities that I have now that I wouldn't have

399
00:19:37,200 --> 00:19:39,240
Speaker 2: been able to get any other way. And so I

400
00:19:39,280 --> 00:19:41,840
Speaker 2: think in that way it helps me. That's actually helped

401
00:19:41,880 --> 00:19:43,920
Speaker 2: a lot with healing passed a lot of those traumatic

402
00:19:43,960 --> 00:19:47,520
Speaker 2: experiences as recognizing the good that's come from it. As

403
00:19:47,560 --> 00:19:49,399
Speaker 2: cliche as that sounds, and I think that takes a

404
00:19:49,400 --> 00:19:51,760
Speaker 2: lot of distance and stability to be able to see

405
00:19:51,800 --> 00:19:54,640
Speaker 2: that for what it is later, But I think that's

406
00:19:54,680 --> 00:19:57,560
Speaker 2: helped me come to terms with that time because honestly,

407
00:19:57,640 --> 00:20:00,920
Speaker 2: like thinking about that time it gets by heart rate going.

408
00:20:01,000 --> 00:20:03,119
Speaker 2: I'm like, oh, I just I feel for that version

409
00:20:03,160 --> 00:20:05,600
Speaker 2: of myself because it was so scary and so dark,

410
00:20:06,240 --> 00:20:08,720
Speaker 2: And I just remember this one conversation we had, which

411
00:20:08,760 --> 00:20:12,720
Speaker 2: was probably the lowest point that we were emotionally. It

412
00:20:12,800 --> 00:20:15,760
Speaker 2: was I think it was like probably a month before

413
00:20:15,880 --> 00:20:18,879
Speaker 2: he was to be born, and we met with the

414
00:20:18,920 --> 00:20:22,880
Speaker 2: palliative care team, a pediatric palliative care team, and they

415
00:20:22,920 --> 00:20:25,600
Speaker 2: basically were talking about it, talking to us about like

416
00:20:25,680 --> 00:20:28,760
Speaker 2: quality of life and how our lives were about to

417
00:20:28,840 --> 00:20:32,080
Speaker 2: change dramatically, and how we should make sure we had

418
00:20:32,119 --> 00:20:33,840
Speaker 2: a plan so that our daughter could be rushed to

419
00:20:33,880 --> 00:20:35,800
Speaker 2: the hospital things were looking like he wouldn't make it

420
00:20:35,840 --> 00:20:38,360
Speaker 2: so she could meet him, and she's just toddling around

421
00:20:38,400 --> 00:20:40,440
Speaker 2: in the back of this room while we're talking about

422
00:20:40,480 --> 00:20:43,960
Speaker 2: these like horrible, harrowing things. I remember laying in bed

423
00:20:44,119 --> 00:20:45,920
Speaker 2: because I don't think any of the doctors had really

424
00:20:45,960 --> 00:20:48,800
Speaker 2: talked to us about the possibility of him dying, right.

425
00:20:48,840 --> 00:20:50,320
Speaker 2: It was so much of here's how we're going to

426
00:20:50,359 --> 00:20:52,440
Speaker 2: help him survive. Here's what we're gonna do, here's the plan.

427
00:20:52,840 --> 00:20:55,760
Speaker 2: This was the first time we had anyone in the

428
00:20:55,800 --> 00:20:58,440
Speaker 2: medical world sitting us down okay, but let's talk about

429
00:20:58,440 --> 00:21:00,879
Speaker 2: what happens if he doesn't make it. And so I

430
00:21:00,920 --> 00:21:02,760
Speaker 2: remember going home from that and just laying in bed

431
00:21:02,840 --> 00:21:07,040
Speaker 2: with the blinds drawn and just unable to get up.

432
00:21:07,080 --> 00:21:09,760
Speaker 2: I was like, this is so scary, and at the

433
00:21:09,840 --> 00:21:15,080
Speaker 2: time it was interesting. I had a no sorry, let

434
00:21:15,080 --> 00:21:18,160
Speaker 2: me resay that. A few months later, after Kimball was born,

435
00:21:18,200 --> 00:21:20,760
Speaker 2: a friend of mine had a baby that passed away

436
00:21:20,840 --> 00:21:23,080
Speaker 2: right before he was born, because we were pregnant at

437
00:21:23,080 --> 00:21:25,840
Speaker 2: the same time and they were due like three weeks apart.

438
00:21:26,080 --> 00:21:29,000
Speaker 2: And I just remember watching them go through this and

439
00:21:29,040 --> 00:21:31,800
Speaker 2: still now when I see them talk about it, and

440
00:21:31,880 --> 00:21:33,919
Speaker 2: just the way that it completely shattered their lives and

441
00:21:33,960 --> 00:21:36,800
Speaker 2: their hearts, and I sho remember thinking like, I don't

442
00:21:36,880 --> 00:21:39,240
Speaker 2: understand what they're going through, but I feel like I

443
00:21:39,280 --> 00:21:42,400
Speaker 2: can empathize better than most people can who haven't actually

444
00:21:42,400 --> 00:21:44,800
Speaker 2: had this happen to them, because it was like they

445
00:21:44,840 --> 00:21:47,280
Speaker 2: were in this dark alleyway and I had peered around

446
00:21:47,320 --> 00:21:49,639
Speaker 2: the corner and I had like really grappled with what

447
00:21:49,680 --> 00:21:51,680
Speaker 2: it would be like to be in that alleyway. I'd

448
00:21:51,720 --> 00:21:53,520
Speaker 2: really thought, what is this going to be like if

449
00:21:53,560 --> 00:21:57,159
Speaker 2: our son passes away? And so because of that I

450
00:21:57,200 --> 00:21:59,560
Speaker 2: feel like, I don't know, it was like teetering on

451
00:21:59,600 --> 00:22:02,679
Speaker 2: those two worlds, right between those worlds of child loss

452
00:22:02,720 --> 00:22:05,800
Speaker 2: and then having a medically complex child. And I'm grateful

453
00:22:05,840 --> 00:22:08,400
Speaker 2: every day that we ended up not going down the

454
00:22:08,440 --> 00:22:13,680
Speaker 2: proverbial alleyway and instead have a medically complex child. But it, yeah,

455
00:22:13,760 --> 00:22:14,920
Speaker 2: it was a very dark time.

456
00:22:15,640 --> 00:22:19,960
Speaker 1: Yeah. Wow, I'm just I'm like, truly, it is a

457
00:22:20,000 --> 00:22:23,480
Speaker 1: beautiful resilience that you guys have, and I don't know

458
00:22:23,520 --> 00:22:27,480
Speaker 1: that anybody can never understand what that experience was like

459
00:22:27,600 --> 00:22:29,960
Speaker 1: for you guys, either of you guys, your friend or

460
00:22:29,960 --> 00:22:34,119
Speaker 1: for you and it's so individualized that even hearing you

461
00:22:34,160 --> 00:22:36,600
Speaker 1: talk about it, like, there's just no there's no way

462
00:22:36,640 --> 00:22:40,680
Speaker 1: I can truly grasp those emotions that you were experiencing

463
00:22:40,760 --> 00:22:42,920
Speaker 1: in that moment. But I do appreciate you sharing them

464
00:22:42,920 --> 00:22:45,679
Speaker 1: because somebody out there will need to hear it and

465
00:22:46,680 --> 00:22:51,040
Speaker 1: we'll have had similar experiences and need that. And if

466
00:22:51,119 --> 00:22:53,800
Speaker 1: I remember correctly, based on your some of your social

467
00:22:53,840 --> 00:22:56,760
Speaker 1: media content I was watching, he had quite a few

468
00:22:56,800 --> 00:23:00,120
Speaker 1: things that he had to do when he was first born,

469
00:23:00,240 --> 00:23:03,120
Speaker 1: and he did make it, and he had to have

470
00:23:03,200 --> 00:23:06,920
Speaker 1: stuff happening all around him for a lot of that

471
00:23:07,200 --> 00:23:09,880
Speaker 1: time period, and I'm not sure how long, but I'm

472
00:23:09,920 --> 00:23:12,480
Speaker 1: curious what that experience is like, because you get excited

473
00:23:12,520 --> 00:23:17,520
Speaker 1: he's here, he was born, yay, but also what's about

474
00:23:17,520 --> 00:23:18,120
Speaker 1: to happen now?

475
00:23:19,480 --> 00:23:23,000
Speaker 2: Yeah, I mean it was interesting that dynamic, because You're right,

476
00:23:23,040 --> 00:23:25,240
Speaker 2: it was this. When I gave birth to him, it

477
00:23:25,320 --> 00:23:28,320
Speaker 2: was this huge flurry. I was induce so our special

478
00:23:28,320 --> 00:23:30,600
Speaker 2: doctor could be there and this whole team would be ready,

479
00:23:31,200 --> 00:23:32,400
Speaker 2: and then all of a sudden, he just like came

480
00:23:32,560 --> 00:23:34,440
Speaker 2: like way faster than they thought, so she never even

481
00:23:34,480 --> 00:23:36,640
Speaker 2: made it there. I mean, like the room was completely full.

482
00:23:36,640 --> 00:23:40,119
Speaker 2: They were like, everyone get in here now because this

483
00:23:40,359 --> 00:23:42,800
Speaker 2: really like fragile baby's about to be born. And so

484
00:23:43,000 --> 00:23:45,280
Speaker 2: the room was just full of commotion, and they delivered

485
00:23:45,359 --> 00:23:47,400
Speaker 2: him and then whisked him out of this like little

486
00:23:47,440 --> 00:23:50,040
Speaker 2: window they had that connected to the nicicu and then

487
00:23:50,119 --> 00:23:51,840
Speaker 2: it was completely empty, and I was just sitting there

488
00:23:51,840 --> 00:23:54,640
Speaker 2: by myself, and I just remember being like, oh my gosh,

489
00:23:54,680 --> 00:23:57,320
Speaker 2: like I did it and he was born alive. And

490
00:23:57,359 --> 00:23:59,199
Speaker 2: I think at that point too, I was like I

491
00:23:59,240 --> 00:24:01,960
Speaker 2: got this all done. Because childbirth is intense, like in

492
00:24:01,960 --> 00:24:03,800
Speaker 2: and of itself, right, that's like its own whole thing.

493
00:24:03,960 --> 00:24:05,600
Speaker 2: So I was like, yeah, I'm maud of myself.

494
00:24:06,000 --> 00:24:08,479
Speaker 1: You're mentioning that you had a room full of people,

495
00:24:08,600 --> 00:24:11,040
Speaker 1: and You're like, I am very vulnerable and I'm about

496
00:24:11,080 --> 00:24:12,720
Speaker 1: to have this huge moment in my life and then

497
00:24:13,200 --> 00:24:16,800
Speaker 1: it's just everybody's gone. I like the juxposition of that

498
00:24:16,880 --> 00:24:17,920
Speaker 1: experience alone.

499
00:24:19,119 --> 00:24:21,400
Speaker 2: Yeah, it was. Yeah, it was crazy. And I think

500
00:24:21,440 --> 00:24:25,160
Speaker 2: it was interesting because I with my daughter, I had

501
00:24:25,240 --> 00:24:28,080
Speaker 2: the experience of delivering her and then they placed her

502
00:24:28,119 --> 00:24:30,440
Speaker 2: on my chest and then I just have this bonding moment,

503
00:24:30,920 --> 00:24:32,879
Speaker 2: and I knew I wouldn't have that with Kimball, and

504
00:24:32,920 --> 00:24:35,800
Speaker 2: so I think that was actually really helpful to know

505
00:24:35,920 --> 00:24:37,800
Speaker 2: that ahead of time. I've talked to their parents who

506
00:24:37,840 --> 00:24:40,000
Speaker 2: didn't know, like they had no idea anything was wrong

507
00:24:40,040 --> 00:24:41,359
Speaker 2: with their baby, and then they were born and then

508
00:24:41,400 --> 00:24:44,159
Speaker 2: whisked away, and I think that's far more traumatic in

509
00:24:44,200 --> 00:24:46,920
Speaker 2: that way. But I had the knowledge beforehand that there's

510
00:24:46,920 --> 00:24:48,840
Speaker 2: no way he will get whisked off, so they can

511
00:24:48,880 --> 00:24:52,040
Speaker 2: stabilize him. And I remember laying there being like, how

512
00:24:52,320 --> 00:24:55,600
Speaker 2: I'm feeling pretty good. I delivered him. He was alive,

513
00:24:55,960 --> 00:25:00,200
Speaker 2: Like they're stabilizing him. My husband's there with him, and

514
00:25:00,200 --> 00:25:02,320
Speaker 2: and so the moment of not being able to hold him,

515
00:25:02,359 --> 00:25:06,080
Speaker 2: I think felt I don't see what's the right word.

516
00:25:06,280 --> 00:25:09,800
Speaker 2: It didn't feel funny, but it felt almost Wow, this

517
00:25:09,840 --> 00:25:11,840
Speaker 2: is a really weird experience. They took the baby out.

518
00:25:11,920 --> 00:25:13,840
Speaker 2: He's gone, and then my husband came in and showed

519
00:25:13,880 --> 00:25:15,359
Speaker 2: me a picture of him. That's how I saw him

520
00:25:15,400 --> 00:25:17,840
Speaker 2: for the first time, because they held him up really

521
00:25:17,840 --> 00:25:19,399
Speaker 2: briefly and then whisked him away, so I didn't really

522
00:25:19,440 --> 00:25:21,879
Speaker 2: see him at first. So he showed me this picture

523
00:25:21,880 --> 00:25:25,520
Speaker 2: of this adorable fat baby. Completely he was sedated, like

524
00:25:25,560 --> 00:25:28,879
Speaker 2: they had to give him extra doses of sedation to

525
00:25:28,960 --> 00:25:31,159
Speaker 2: be able to intubate him, and so they were shoving

526
00:25:31,200 --> 00:25:34,120
Speaker 2: the breathing tubes down into his lungs and I guess

527
00:25:34,160 --> 00:25:36,560
Speaker 2: he had been pulling them out and so they had

528
00:25:36,560 --> 00:25:39,040
Speaker 2: to sedate him. And so I saw this like adorable

529
00:25:39,160 --> 00:25:41,480
Speaker 2: splade baby, and I was like, oh, my gosh, there

530
00:25:41,480 --> 00:25:43,800
Speaker 2: he is. There's Kimball. And so I think it was

531
00:25:43,960 --> 00:25:47,240
Speaker 2: just it was a very humanizing moment to be like,

532
00:25:47,480 --> 00:25:50,040
Speaker 2: he's a real human baby and he is mine and

533
00:25:50,080 --> 00:25:53,120
Speaker 2: I'm his mom. And I felt so proud of us,

534
00:25:53,200 --> 00:25:56,879
Speaker 2: like forgetting this far. And they wheeled me back to

535
00:25:56,920 --> 00:25:58,640
Speaker 2: see him, and so I was like, because I had

536
00:25:58,680 --> 00:26:00,480
Speaker 2: just had him, and so I was in a wheelchair

537
00:26:01,160 --> 00:26:02,920
Speaker 2: and it brought me back to the nicky to see him,

538
00:26:02,920 --> 00:26:04,679
Speaker 2: and there was this beautiful baby and I was like,

539
00:26:04,880 --> 00:26:07,000
Speaker 2: he's mine. I don't know. It was interesting how it's

540
00:26:07,040 --> 00:26:11,760
Speaker 2: like there's this almost detachment because he wasn't just laid

541
00:26:11,760 --> 00:26:13,800
Speaker 2: on my chest. It wasn't like on now, I'm never

542
00:26:13,880 --> 00:26:16,040
Speaker 2: parted with him like it was with my daughter, because

543
00:26:16,080 --> 00:26:18,359
Speaker 2: he was like being taken care of by other people.

544
00:26:19,040 --> 00:26:21,680
Speaker 2: It almost felt like this little every morning when we

545
00:26:21,680 --> 00:26:23,840
Speaker 2: would go once I was discharged and we'd come visit

546
00:26:23,920 --> 00:26:26,639
Speaker 2: him in the nicke, you it felt like Christmas morning.

547
00:26:26,720 --> 00:26:28,320
Speaker 2: Like every morning it was like, oh, there he is,

548
00:26:28,359 --> 00:26:30,560
Speaker 2: there's my son. And it was just such an interesting

549
00:26:31,280 --> 00:26:34,840
Speaker 2: experience and it was very painful to leave him there,

550
00:26:35,240 --> 00:26:37,720
Speaker 2: but at the same time, it was a very unique

551
00:26:38,359 --> 00:26:40,399
Speaker 2: feeling of joy to go there and to feel so

552
00:26:40,480 --> 00:26:44,119
Speaker 2: proud of this baby that was mine and so you

553
00:26:44,240 --> 00:26:44,720
Speaker 2: brought him.

554
00:26:44,640 --> 00:26:46,679
Speaker 1: Into the world, so I could see how that like,

555
00:26:47,080 --> 00:26:49,840
Speaker 1: he is mine, but also I don't have him yet,

556
00:26:50,000 --> 00:26:51,879
Speaker 1: and you're used to the experience that you had with

557
00:26:51,920 --> 00:26:54,560
Speaker 1: your daughter, so vastly different.

558
00:26:55,119 --> 00:26:58,120
Speaker 2: Yeah, It was messy, for sure. It was so there

559
00:26:58,119 --> 00:27:02,080
Speaker 2: were those intense emotions of joy and like pride over him, Look,

560
00:27:02,119 --> 00:27:04,520
Speaker 2: we did it, he's here, and being so grateful that

561
00:27:04,600 --> 00:27:08,080
Speaker 2: he was there safely, as well as obviously a lot

562
00:27:08,119 --> 00:27:11,240
Speaker 2: of anxiety about will he stay okay, And we weren't

563
00:27:11,240 --> 00:27:13,199
Speaker 2: able to hold him for the first I think it

564
00:27:13,280 --> 00:27:15,560
Speaker 2: was on day like nine we were able to hold

565
00:27:15,640 --> 00:27:18,120
Speaker 2: him because he had this as part of a syndrome.

566
00:27:18,640 --> 00:27:22,720
Speaker 2: His cervical spine was not hardened the bones, the vertebrae

567
00:27:22,760 --> 00:27:24,600
Speaker 2: there and on the C one and C two level,

568
00:27:24,600 --> 00:27:29,640
Speaker 2: so it's a very like catastrophic catastrophic area to not

569
00:27:29,720 --> 00:27:32,720
Speaker 2: be stable to protect his cervical spine, and so if

570
00:27:32,720 --> 00:27:34,880
Speaker 2: he put his chin down to his chest he could

571
00:27:34,880 --> 00:27:37,840
Speaker 2: be paralyzed or die. And so it was like they

572
00:27:38,200 --> 00:27:40,199
Speaker 2: actually kept him sedated the first week too, so we

573
00:27:40,200 --> 00:27:41,919
Speaker 2: didn't see his eyes, we didn't know what color his

574
00:27:41,960 --> 00:27:45,040
Speaker 2: eyes were yet, to keep him from moving around too

575
00:27:45,119 --> 00:27:47,960
Speaker 2: much and injuring himself. So I think just things like

576
00:27:48,000 --> 00:27:50,600
Speaker 2: that was just it was so vastly different than your

577
00:27:50,640 --> 00:27:54,040
Speaker 2: typical baby experience, and so there was a lot of

578
00:27:54,080 --> 00:27:57,720
Speaker 2: anxiety there. There was also like that longing to hold him.

579
00:27:57,720 --> 00:27:59,080
Speaker 2: At first, I was like just so proud of the

580
00:27:59,080 --> 00:28:01,919
Speaker 2: picture we had and being able to see him, But

581
00:28:01,960 --> 00:28:04,240
Speaker 2: then I felt angry. I was like, I want to

582
00:28:04,240 --> 00:28:06,520
Speaker 2: be able to hold my baby. I can't even hold him.

583
00:28:07,000 --> 00:28:08,640
Speaker 2: I can just touch him while he's on this bed

584
00:28:08,720 --> 00:28:11,200
Speaker 2: other people are taking care of him. It was such

585
00:28:11,200 --> 00:28:13,720
Speaker 2: a detached parenting experience, and I knew what it was

586
00:28:13,760 --> 00:28:15,359
Speaker 2: supposed to be. Like, I was like, I'm not a

587
00:28:15,359 --> 00:28:17,720
Speaker 2: first time mom, Like I'm watching these strangers like change

588
00:28:17,760 --> 00:28:21,040
Speaker 2: his diaper. And they allowed us to do what they

589
00:28:21,040 --> 00:28:24,440
Speaker 2: called his cares, which is changing diapers and like switching

590
00:28:24,480 --> 00:28:27,679
Speaker 2: around his little like pull socks on his foot and

591
00:28:27,720 --> 00:28:29,800
Speaker 2: things like that. And they were like, oh, you can

592
00:28:29,880 --> 00:28:31,679
Speaker 2: do some of the cares if you want to, like

593
00:28:31,720 --> 00:28:34,080
Speaker 2: help you like bond with your baby and stuff. And

594
00:28:34,160 --> 00:28:36,879
Speaker 2: so I remember changing his diaper and it was a

595
00:28:36,880 --> 00:28:39,880
Speaker 2: wet diaper and I was like, should I like wipe

596
00:28:39,960 --> 00:28:41,719
Speaker 2: him if it's just pete? And I was like, what

597
00:28:41,840 --> 00:28:43,720
Speaker 2: is happening right now? Why am I asking a nurse

598
00:28:43,800 --> 00:28:46,640
Speaker 2: if I should wipe my baby's bum? I am a mom,

599
00:28:46,680 --> 00:28:48,440
Speaker 2: Like I already know all this stuff. It just felt

600
00:28:48,480 --> 00:28:50,480
Speaker 2: so weird to feel like I had to ask permission

601
00:28:50,520 --> 00:28:54,280
Speaker 2: for everything when I already was I already was an

602
00:28:54,400 --> 00:28:57,680
Speaker 2: established mom at this point.

603
00:28:58,320 --> 00:29:00,840
Speaker 1: That experience just being in there, and you feel a

604
00:29:00,840 --> 00:29:04,520
Speaker 1: little helpless too, I would think, because you are asking someone,

605
00:29:04,560 --> 00:29:06,280
Speaker 1: but also you can't do all the things that you

606
00:29:06,360 --> 00:29:08,880
Speaker 1: know you're capable of doing, but it's like you're not

607
00:29:08,920 --> 00:29:12,960
Speaker 1: allowed to until given that space. So how long was

608
00:29:12,960 --> 00:29:15,720
Speaker 1: he in the nick U four He was.

609
00:29:15,640 --> 00:29:18,120
Speaker 2: There for twenty two days, which felt so long to

610
00:29:18,160 --> 00:29:20,960
Speaker 2: me at the time, But we also watched another little

611
00:29:21,000 --> 00:29:24,080
Speaker 2: resident there have her first birthday there and she had

612
00:29:24,080 --> 00:29:26,680
Speaker 2: not gone home yet, So I think I also felt

613
00:29:26,720 --> 00:29:31,280
Speaker 2: the gravity of I'm so grateful that he didn't have

614
00:29:31,280 --> 00:29:33,320
Speaker 2: to stay here very long, and I'm so grateful he's

615
00:29:33,360 --> 00:29:35,520
Speaker 2: coming home because we didn't know if we would take

616
00:29:35,560 --> 00:29:38,160
Speaker 2: him home, and there was a moment where he had

617
00:29:38,200 --> 00:29:40,160
Speaker 2: just come out of surgery and things were looking dicey,

618
00:29:40,960 --> 00:29:43,320
Speaker 2: and so being able to bring him home was again

619
00:29:43,360 --> 00:29:46,280
Speaker 2: it was like bringing home this little like this ultimate

620
00:29:46,360 --> 00:29:49,200
Speaker 2: Christmas present of our baby's coming home now, which again

621
00:29:49,240 --> 00:29:51,280
Speaker 2: it was Yeah, it's just so surreal the way it happened.

622
00:29:52,520 --> 00:29:55,880
Speaker 1: Yeah. So then the years that follow and he's now seven.

623
00:29:56,920 --> 00:30:02,240
Speaker 1: In those years, like what has been the medical responsibility

624
00:30:02,360 --> 00:30:05,280
Speaker 1: for you guys. Been like, as he does grow up

625
00:30:05,320 --> 00:30:09,320
Speaker 1: and he becomes his own little human and gets into

626
00:30:09,440 --> 00:30:11,240
Speaker 1: all the fun years and you guys get to do

627
00:30:11,280 --> 00:30:15,040
Speaker 1: stuff with him. What is that other side, though, the

628
00:30:15,080 --> 00:30:19,520
Speaker 1: care that goes into making sure he's allowed to have

629
00:30:19,560 --> 00:30:20,560
Speaker 1: those experiences.

630
00:30:21,960 --> 00:30:25,800
Speaker 2: So in the first few years, the biggest the biggest

631
00:30:25,880 --> 00:30:28,320
Speaker 2: hurdle was his neck, right making sure he didn't because

632
00:30:28,320 --> 00:30:31,480
Speaker 2: babies and kids, like, they fall over, they roll over

633
00:30:31,560 --> 00:30:33,840
Speaker 2: like they're doing a lot, and having this thing hanging

634
00:30:33,920 --> 00:30:35,760
Speaker 2: over us of oh, but he can't fall or he'll

635
00:30:35,800 --> 00:30:38,360
Speaker 2: break his neck and maybe die or be paralyzed was

636
00:30:38,480 --> 00:30:41,520
Speaker 2: just this really heavy, ominous thing. So we have these

637
00:30:41,520 --> 00:30:43,720
Speaker 2: big cervical spine collars, like kind of like the ones

638
00:30:43,760 --> 00:30:46,160
Speaker 2: you see when people break their neck. He had that

639
00:30:46,240 --> 00:30:48,600
Speaker 2: on from day seven or whatever day it was that

640
00:30:48,640 --> 00:30:51,080
Speaker 2: they made it for him, and so that was a

641
00:30:51,080 --> 00:30:53,760
Speaker 2: big part of his care. We also had a rollercoaster

642
00:30:53,840 --> 00:30:56,000
Speaker 2: with that where there was one appointment they were like, oh,

643
00:30:56,360 --> 00:30:58,560
Speaker 2: actually it's all hardened. It's great, You're good to go.

644
00:30:58,600 --> 00:31:00,640
Speaker 2: You don't need this anymore. You don't need this big

645
00:31:00,640 --> 00:31:02,640
Speaker 2: invasive surgery to fix it like we thought you would.

646
00:31:03,240 --> 00:31:05,640
Speaker 2: And we were like on cloud nine bringing him home

647
00:31:05,680 --> 00:31:08,560
Speaker 2: without this and finally being able to hold him without

648
00:31:08,640 --> 00:31:11,200
Speaker 2: this brace. And then three months later at the follow up,

649
00:31:11,200 --> 00:31:13,560
Speaker 2: they were like, no way, Like the other doctor was

650
00:31:13,600 --> 00:31:16,080
Speaker 2: completely wrong. This is so dangerous. And to realize that

651
00:31:16,160 --> 00:31:18,760
Speaker 2: whole time, he could have died anytime during that point

652
00:31:19,280 --> 00:31:21,640
Speaker 2: or any point during that time. Yeah, so that was

653
00:31:21,680 --> 00:31:24,120
Speaker 2: really scary. And so again that roller coaster of going

654
00:31:24,200 --> 00:31:27,360
Speaker 2: up and down, and then later it did harden and

655
00:31:27,440 --> 00:31:29,400
Speaker 2: so he never ended up needing this huge surgery and

656
00:31:29,400 --> 00:31:30,920
Speaker 2: he didn't need the color anymore. So that was a

657
00:31:31,040 --> 00:31:33,520
Speaker 2: huge relief. And that was like, like, over the years

658
00:31:34,120 --> 00:31:36,720
Speaker 2: medically he's stabilized to where he is now, and so

659
00:31:37,040 --> 00:31:39,920
Speaker 2: just one thing at a time was dropped off the

660
00:31:39,920 --> 00:31:42,920
Speaker 2: plate of medical care. So that was one huge one.

661
00:31:43,440 --> 00:31:45,920
Speaker 2: He also had a feeding tube for the first few years,

662
00:31:45,960 --> 00:31:49,040
Speaker 2: and so once he weaned off of that, that was incredible.

663
00:31:49,680 --> 00:31:52,160
Speaker 2: Although it was so cute because his perspective of his

664
00:31:52,240 --> 00:31:55,800
Speaker 2: disabilities is very different than ours, Like he's always been

665
00:31:56,000 --> 00:31:59,520
Speaker 2: so proud and which I love, but like when we

666
00:31:59,560 --> 00:32:02,360
Speaker 2: removed his he had a g twobe button and so

667
00:32:02,400 --> 00:32:04,760
Speaker 2: that just goes right into his stomach and so you

668
00:32:04,840 --> 00:32:06,360
Speaker 2: were able to feed him that way. And so the

669
00:32:06,440 --> 00:32:09,000
Speaker 2: day we removed that little button that went into his stomach,

670
00:32:09,600 --> 00:32:12,400
Speaker 2: he was so upset. We had ice cream ready, we

671
00:32:12,400 --> 00:32:15,400
Speaker 2: were gonna have this big party, and he just laid

672
00:32:15,440 --> 00:32:18,440
Speaker 2: on the floor with his special blanket like crying. I

673
00:32:18,520 --> 00:32:20,480
Speaker 2: was like, oh, my gosh, he's really sad. And he

674
00:32:20,600 --> 00:32:23,160
Speaker 2: used to play with his little button when he was

675
00:32:23,240 --> 00:32:26,120
Speaker 2: nervous or like sad. So I realized, like, we just

676
00:32:26,240 --> 00:32:28,800
Speaker 2: removed a body part of his basically to him, like

677
00:32:28,840 --> 00:32:31,800
Speaker 2: he never remembers not having it. It's been very interesting

678
00:32:31,840 --> 00:32:34,760
Speaker 2: to see the difference in how he feels about that

679
00:32:34,800 --> 00:32:37,800
Speaker 2: type of thing to compared to how we feel because

680
00:32:37,800 --> 00:32:39,240
Speaker 2: we're like, oh, you shouldn't have needed that in the

681
00:32:39,240 --> 00:32:41,440
Speaker 2: first place. I'm so sorry this happened to you. And

682
00:32:41,480 --> 00:32:42,760
Speaker 2: for him, where'd my button go?

683
00:32:42,960 --> 00:32:43,040
Speaker 1: Like?

684
00:32:43,080 --> 00:32:46,040
Speaker 2: I really liked playing with that. Yeah, So that's been

685
00:32:46,080 --> 00:32:46,960
Speaker 2: really interesting.

686
00:32:47,600 --> 00:32:50,600
Speaker 1: The kid's perspective is so cool. They don't see it

687
00:32:50,720 --> 00:32:54,280
Speaker 1: as anything other than just them. This is who I am,

688
00:32:54,440 --> 00:32:57,920
Speaker 1: this is how I was born. And it's cool to

689
00:32:58,000 --> 00:33:00,920
Speaker 1: hear that was the experience because I I bet that

690
00:33:01,000 --> 00:33:04,360
Speaker 1: allowed you guys to have even more perspective of him,

691
00:33:04,600 --> 00:33:07,240
Speaker 1: thinking he probably felt all the things that you guys

692
00:33:07,240 --> 00:33:09,320
Speaker 1: were feeling, and he was born and all of this

693
00:33:10,320 --> 00:33:13,000
Speaker 1: emotional experience that you guys went through of this is

694
00:33:13,040 --> 00:33:15,280
Speaker 1: what his life is going to be like and he

695
00:33:15,400 --> 00:33:17,160
Speaker 1: was just born. I was like, this is just me.

696
00:33:18,280 --> 00:33:21,840
Speaker 2: Yeah, yeah, for sure. He also is. Part of his

697
00:33:21,880 --> 00:33:24,840
Speaker 2: diagnosis is deaf blind, which means he just has that

698
00:33:24,960 --> 00:33:28,320
Speaker 2: dual loss of visual impairment and hearing loss. So in

699
00:33:28,360 --> 00:33:31,200
Speaker 2: the first little bit when he was a baby, he

700
00:33:31,320 --> 00:33:34,320
Speaker 2: was profoundly deaf and profoundly blind, and so I just

701
00:33:34,360 --> 00:33:36,520
Speaker 2: remember that same type of thing of projecting how I

702
00:33:36,520 --> 00:33:38,240
Speaker 2: would feel. I love being like, what would it be

703
00:33:38,360 --> 00:33:41,680
Speaker 2: like to only have light perception at like bright windows

704
00:33:42,280 --> 00:33:45,080
Speaker 2: and to have these squeaky little hearing aids that are

705
00:33:45,200 --> 00:33:47,600
Speaker 2: like sound completely different and he really can't hear that

706
00:33:47,640 --> 00:33:50,640
Speaker 2: well with these either, Like that was something that I

707
00:33:50,680 --> 00:33:54,760
Speaker 2: felt so distraught about. But he has now his vision

708
00:33:54,800 --> 00:33:57,520
Speaker 2: has improved from what it used to be, and so

709
00:33:57,560 --> 00:34:00,280
Speaker 2: he's pretty functional with it. But even like he can't

710
00:34:01,040 --> 00:34:04,320
Speaker 2: he will often not see things that are clearly there,

711
00:34:04,360 --> 00:34:07,360
Speaker 2: and he's just happy to be here. And it's just

712
00:34:07,440 --> 00:34:09,680
Speaker 2: it's very interesting to see how it doesn't phaze him

713
00:34:09,680 --> 00:34:12,319
Speaker 2: because he doesn't know any different. I think sometimes his

714
00:34:12,400 --> 00:34:14,239
Speaker 2: parents that's a really sad thought of, Oh, he doesn't

715
00:34:14,280 --> 00:34:16,520
Speaker 2: know any different, But he doesn't know any different, and

716
00:34:16,560 --> 00:34:19,200
Speaker 2: so I think really coming to terms with that has

717
00:34:19,280 --> 00:34:24,239
Speaker 2: really helped too, and how I view his disabilities. So

718
00:34:24,360 --> 00:34:27,799
Speaker 2: he's fine with this. And he does have dwarfism, so

719
00:34:27,880 --> 00:34:30,279
Speaker 2: he's very tiny. He looks like a three year old

720
00:34:30,360 --> 00:34:33,799
Speaker 2: even though he's almost seven, and sometimes he'll be like, oh,

721
00:34:34,000 --> 00:34:35,920
Speaker 2: I want to be tall. But other than that, he

722
00:34:36,000 --> 00:34:39,000
Speaker 2: just struts right into school. I'm super confident and proud

723
00:34:39,000 --> 00:34:41,440
Speaker 2: of himself and all the parts of him. And so

724
00:34:42,239 --> 00:34:45,040
Speaker 2: that's been something I wish I could have shown myself

725
00:34:45,480 --> 00:34:47,719
Speaker 2: in those first few weeks after finding out that he

726
00:34:47,719 --> 00:34:50,120
Speaker 2: would be disabled, to be like, but look like, look

727
00:34:50,120 --> 00:34:55,640
Speaker 2: at this adorable child that's alive and medically stable and

728
00:34:56,320 --> 00:34:59,160
Speaker 2: embraces himself with all of his disabilities. And the I

729
00:34:59,160 --> 00:35:00,680
Speaker 2: think one of the hard parts of this is that's

730
00:35:00,760 --> 00:35:03,040
Speaker 2: not the case for a lot of parents, right that

731
00:35:03,280 --> 00:35:06,799
Speaker 2: it doesn't often happen where they stabilize medically and then

732
00:35:06,840 --> 00:35:09,719
Speaker 2: everything's like you're just assisting them with their disabilities, but

733
00:35:09,760 --> 00:35:12,480
Speaker 2: everything's okay. I think for a lot of parents and

734
00:35:12,560 --> 00:35:16,680
Speaker 2: especially the ones I talk to their child's diseases progress

735
00:35:17,080 --> 00:35:19,920
Speaker 2: until they pass away before adulthood. And that is the

736
00:35:20,000 --> 00:35:23,160
Speaker 2: really heavy hard side of this is that my story

737
00:35:23,239 --> 00:35:25,279
Speaker 2: is not the story for many parents, and I'm very

738
00:35:25,280 --> 00:35:27,719
Speaker 2: aware of that. And so you asked at the beginning

739
00:35:28,320 --> 00:35:31,120
Speaker 2: why I started the podcast that I did, and it

740
00:35:31,160 --> 00:35:33,520
Speaker 2: really goes it's those are the parents that I really

741
00:35:33,560 --> 00:35:35,799
Speaker 2: aim to serve, or the parents who, first of all,

742
00:35:35,880 --> 00:35:38,160
Speaker 2: the ones that are experiencing things the way I did

743
00:35:39,040 --> 00:35:42,120
Speaker 2: in those dark early days, as well as the parents

744
00:35:42,160 --> 00:35:44,279
Speaker 2: who stay in those dark days, right, the ones who

745
00:35:44,320 --> 00:35:46,719
Speaker 2: don't have the happy ending with the flowers and the

746
00:35:46,760 --> 00:35:49,080
Speaker 2: confident child and all those things, The parents who will

747
00:35:49,120 --> 00:35:51,640
Speaker 2: lose that child, the one that they've grown to love

748
00:35:51,719 --> 00:35:55,200
Speaker 2: so much, and it's just such an isolating experience. And

749
00:35:56,000 --> 00:35:58,800
Speaker 2: I think community is something that can be so empowering

750
00:35:58,800 --> 00:36:02,560
Speaker 2: and so healing. So that drives everything that we do

751
00:36:02,800 --> 00:36:05,560
Speaker 2: to try to help create that community. And there's already

752
00:36:05,600 --> 00:36:07,400
Speaker 2: there are so many parents doing similar things. I'm not

753
00:36:07,400 --> 00:36:09,959
Speaker 2: the only one creating that community, but I think every

754
00:36:09,960 --> 00:36:13,360
Speaker 2: effort there is so important.

755
00:36:12,760 --> 00:36:16,120
Speaker 1: And to your point, because there are rare conditions, these

756
00:36:16,120 --> 00:36:19,480
Speaker 1: are things that are isolating and feel very lonely. So

757
00:36:19,920 --> 00:36:24,720
Speaker 1: anything anybody can do to help, just provide a space

758
00:36:24,719 --> 00:36:28,239
Speaker 1: where people can feel seen and connected to is the

759
00:36:28,280 --> 00:36:31,600
Speaker 1: best thing. That was the purpose of my podcast was

760
00:36:31,640 --> 00:36:35,760
Speaker 1: doing that, just in a broader sense, not as niche.

761
00:36:35,800 --> 00:36:38,120
Speaker 1: So I love what you're doing. I think it's incredible.

762
00:36:38,160 --> 00:36:39,759
Speaker 1: It's how I found you when I was trying to

763
00:36:39,760 --> 00:36:42,680
Speaker 1: find someone to share their story and be willing to

764
00:36:42,800 --> 00:36:45,359
Speaker 1: because it's also hard to share a story like this

765
00:36:45,600 --> 00:36:48,920
Speaker 1: and have so many experiences that you've had and be like, yeah,

766
00:36:49,000 --> 00:36:50,960
Speaker 1: let me keep reliving them or let me keep talking

767
00:36:50,960 --> 00:36:53,520
Speaker 1: about them. That's not an easy thing to do. So

768
00:36:53,680 --> 00:36:56,040
Speaker 1: I love what you're doing and I think it's awesome.

769
00:36:56,800 --> 00:37:01,520
Speaker 1: And you do mention your daughter. You have two kids.

770
00:37:01,719 --> 00:37:06,000
Speaker 1: What is it like the experience for you now parenting

771
00:37:06,160 --> 00:37:08,000
Speaker 1: kids that have differences.

772
00:37:09,120 --> 00:37:13,560
Speaker 2: At the beginning, it was so hard and scary because

773
00:37:13,600 --> 00:37:16,960
Speaker 2: our daughter Wendy was really struggling while I was struggling.

774
00:37:17,000 --> 00:37:18,640
Speaker 2: I think it had more to do with me struggling

775
00:37:18,680 --> 00:37:20,759
Speaker 2: than it did her brother struggling. At the time, I

776
00:37:20,760 --> 00:37:23,640
Speaker 2: think that instability has a stay at home mom before

777
00:37:23,680 --> 00:37:25,880
Speaker 2: that and everything, so like we were together all the time,

778
00:37:26,000 --> 00:37:28,560
Speaker 2: and so I think that me having a hard time

779
00:37:28,640 --> 00:37:33,360
Speaker 2: emotionally therefore translated over to her, and I felt like

780
00:37:33,840 --> 00:37:36,640
Speaker 2: I was drowning and she was drowning too next to me.

781
00:37:36,680 --> 00:37:38,320
Speaker 2: But there was nothing I could do because I was

782
00:37:38,360 --> 00:37:41,480
Speaker 2: also drowning, and so that was incredibly painful. But as

783
00:37:41,560 --> 00:37:45,040
Speaker 2: Kimball has stabilized over the years and I've also stabilized,

784
00:37:45,200 --> 00:37:48,160
Speaker 2: it's become just part of our family, just the way

785
00:37:48,160 --> 00:37:51,399
Speaker 2: our family is. We talk about Kimball's we make jokes

786
00:37:51,400 --> 00:37:53,480
Speaker 2: about his hearing aims, or oh, he totally misheard me,

787
00:37:53,680 --> 00:37:57,359
Speaker 2: or sometimes he'll walk into a room that I'm sitting in,

788
00:37:57,719 --> 00:37:59,919
Speaker 2: like mom, and scan the room and then walk out

789
00:38:00,040 --> 00:38:01,600
Speaker 2: and look in all the other rooms and then I'll

790
00:38:01,640 --> 00:38:03,160
Speaker 2: bet kim Mo'm in here, and then he walks and

791
00:38:03,160 --> 00:38:07,160
Speaker 2: he's like, that was magic. Yep, Kimball, that was magic.

792
00:38:07,320 --> 00:38:10,560
Speaker 2: That's incredible, you disappeared here. So just little things like

793
00:38:10,600 --> 00:38:13,560
Speaker 2: the Wendy and her dad and I can have little

794
00:38:13,640 --> 00:38:16,720
Speaker 2: jokes about because funny little things like that happen related

795
00:38:16,719 --> 00:38:20,040
Speaker 2: to his disabilities. And I think we're also going to

796
00:38:20,120 --> 00:38:22,239
Speaker 2: test her for autism, because that's one thing that we've

797
00:38:22,280 --> 00:38:24,839
Speaker 2: been curious about, especially with the way that she really

798
00:38:24,880 --> 00:38:27,839
Speaker 2: struggled in the beginning with that change. And so when

799
00:38:27,880 --> 00:38:30,319
Speaker 2: I first talked about this with her, Hey, Wendy, I

800
00:38:30,320 --> 00:38:32,480
Speaker 2: think you might be autistic. And this is something too

801
00:38:32,520 --> 00:38:34,840
Speaker 2: that I've become so much more open to and neutral

802
00:38:34,880 --> 00:38:39,760
Speaker 2: about because of being exposed to disabled individuals and autistic adults,

803
00:38:39,760 --> 00:38:42,160
Speaker 2: and so for me, there wasn't that stigma that I

804
00:38:42,200 --> 00:38:44,239
Speaker 2: think there is for some people. And so I was like,

805
00:38:44,320 --> 00:38:46,000
Speaker 2: you know, like, Wendy, I think you might be autistic.

806
00:38:46,040 --> 00:38:47,960
Speaker 2: And I was like, it's a different type of disability,

807
00:38:47,960 --> 00:38:49,319
Speaker 2: and she was like, oh my gosh, I might be

808
00:38:49,320 --> 00:38:52,719
Speaker 2: disabled like Kimble, and she was just thrilled. So I

809
00:38:52,760 --> 00:38:55,600
Speaker 2: think that's something that I have felt has been such

810
00:38:55,640 --> 00:38:58,920
Speaker 2: a strength to her, is being able to have that

811
00:38:59,000 --> 00:39:02,439
Speaker 2: perspective and right from the get go that I didn't

812
00:39:02,480 --> 00:39:04,360
Speaker 2: have as an adult when I was pregnant with Kimball.

813
00:39:04,400 --> 00:39:06,959
Speaker 2: That was like the world was ending to me, even

814
00:39:07,000 --> 00:39:09,239
Speaker 2: just the disability side of it. And for her, she

815
00:39:09,440 --> 00:39:11,719
Speaker 2: was just thrilled to think that she might be in

816
00:39:11,800 --> 00:39:14,200
Speaker 2: this club of being a disabled person, and I think

817
00:39:14,320 --> 00:39:17,040
Speaker 2: that has made me very proud of her. And then

818
00:39:17,080 --> 00:39:20,400
Speaker 2: there's also this experience that we had recently where so

819
00:39:20,520 --> 00:39:23,400
Speaker 2: I'm a carrier for our son's condition. So I passed

820
00:39:23,400 --> 00:39:26,480
Speaker 2: it to him, passed it to him unknowingly, I have

821
00:39:26,480 --> 00:39:28,880
Speaker 2: a fifty to fifty chance of passing it on to children.

822
00:39:29,480 --> 00:39:31,600
Speaker 2: Boys are the only ones who manifested. This is all

823
00:39:31,600 --> 00:39:34,000
Speaker 2: the genetics stuff that I forgot from high school and

824
00:39:34,080 --> 00:39:38,000
Speaker 2: I had to relearn as it really impacted my real life.

825
00:39:38,040 --> 00:39:40,600
Speaker 2: But so our daughter Wendy had a fifty chance of

826
00:39:40,600 --> 00:39:43,040
Speaker 2: being a carrier for this as well and having the

827
00:39:43,120 --> 00:39:46,640
Speaker 2: same from what I a similar experiences I've had having children,

828
00:39:47,480 --> 00:39:49,840
Speaker 2: and so that was this really intense thing. And she

829
00:39:49,920 --> 00:39:52,680
Speaker 2: decided she wanted to be tested when she's nine years

830
00:39:52,680 --> 00:39:55,319
Speaker 2: old right now, so that look down upon. We had

831
00:39:55,320 --> 00:39:58,839
Speaker 2: to push back against the geneticis being like, that's too young.

832
00:39:58,880 --> 00:40:00,759
Speaker 2: She should wait till she's about to find about to

833
00:40:00,760 --> 00:40:03,799
Speaker 2: have children if she chooses to. But she wanted to know.

834
00:40:03,880 --> 00:40:05,080
Speaker 2: She was like, I want to know if I'm a

835
00:40:05,120 --> 00:40:07,759
Speaker 2: carrier or not. And so we walked this path with her.

836
00:40:08,400 --> 00:40:10,760
Speaker 2: This is just so recent, which the last couple of months,

837
00:40:10,800 --> 00:40:13,600
Speaker 2: and it was very emotional, is a very heavy thing

838
00:40:13,640 --> 00:40:16,319
Speaker 2: to watch her going through, but she handled it with

839
00:40:16,480 --> 00:40:19,640
Speaker 2: so much self compassion and self awareness, and I was

840
00:40:19,800 --> 00:40:22,440
Speaker 2: so proud of her, and so we later found out

841
00:40:22,640 --> 00:40:25,120
Speaker 2: she came back negative for it, which was a huge celebration,

842
00:40:25,719 --> 00:40:28,239
Speaker 2: But throughout the whole process, I was like, she's had

843
00:40:28,280 --> 00:40:31,279
Speaker 2: to grow up faster than her peers in this type

844
00:40:31,320 --> 00:40:34,960
Speaker 2: of this heaviness that she's had in her life, and

845
00:40:35,200 --> 00:40:37,920
Speaker 2: to be able to see the benefits that has also

846
00:40:38,040 --> 00:40:39,600
Speaker 2: caused her. Like I was talking about the beginning of

847
00:40:39,680 --> 00:40:42,160
Speaker 2: seeing the hard things that we've been through and to

848
00:40:42,160 --> 00:40:43,680
Speaker 2: be like, oh, I can see the benefits that's had

849
00:40:43,719 --> 00:40:46,440
Speaker 2: in my life in different qualities I have now And

850
00:40:46,480 --> 00:40:49,160
Speaker 2: so it's been really cool to see a version of

851
00:40:49,200 --> 00:40:51,759
Speaker 2: that in our daughter because these children, the siblings, are

852
00:40:51,800 --> 00:40:54,480
Speaker 2: going along the ride. They're not the parents and they're

853
00:40:54,520 --> 00:40:56,400
Speaker 2: not the disabled person, but they're going along in their

854
00:40:56,440 --> 00:41:00,839
Speaker 2: own unique perspective with the same just that we are.

855
00:41:00,880 --> 00:41:03,240
Speaker 2: And so that has made me feel very proud of her.

856
00:41:04,080 --> 00:41:07,480
Speaker 1: Wow, it, Madeline, it sounds like your kids are just

857
00:41:07,600 --> 00:41:10,879
Speaker 1: being raised with so much love. That's what comes through

858
00:41:10,960 --> 00:41:13,080
Speaker 1: in your stories and what you're talking about. And I

859
00:41:13,160 --> 00:41:16,560
Speaker 1: know sometimes it's hard as a parent, like bigger picture

860
00:41:16,680 --> 00:41:18,480
Speaker 1: to you see them and you're proud of them, but

861
00:41:19,200 --> 00:41:22,680
Speaker 1: to also know your role in your husband's role, and

862
00:41:23,000 --> 00:41:26,319
Speaker 1: because that doesn't just happen like we are how we

863
00:41:26,320 --> 00:41:30,480
Speaker 1: were raised and what's around us, and your daughter and

864
00:41:30,560 --> 00:41:33,239
Speaker 1: your son just sound so full of life and so

865
00:41:33,560 --> 00:41:35,879
Speaker 1: just ready to take on anything that comes at them,

866
00:41:35,920 --> 00:41:37,160
Speaker 1: and I think it's really awesome.

867
00:41:38,320 --> 00:41:39,240
Speaker 2: Thank you so much.

868
00:41:39,800 --> 00:41:44,040
Speaker 1: Yeah, And before we start to get towards the end

869
00:41:44,120 --> 00:41:48,320
Speaker 1: of this, I want to acknowledge too, like you're a human,

870
00:41:48,680 --> 00:41:52,920
Speaker 1: your husband's a human. You guys were experiencing these things.

871
00:41:53,440 --> 00:41:56,560
Speaker 1: How were you also making sure to show up for

872
00:41:56,640 --> 00:41:59,160
Speaker 1: yourselves and take care of yourselves while all of this

873
00:41:59,239 --> 00:42:03,719
Speaker 1: stuff started happening in your life? And just over the

874
00:42:03,760 --> 00:42:05,400
Speaker 1: course of this entire.

875
00:42:05,200 --> 00:42:11,480
Speaker 2: Experience, I the sense the community aspect has become a

876
00:42:11,560 --> 00:42:16,040
Speaker 2: huge part of processing and healing for me. But during

877
00:42:16,080 --> 00:42:18,400
Speaker 2: the thick of it, I had no idea how to

878
00:42:18,400 --> 00:42:20,640
Speaker 2: find people who understood. So I really was going through

879
00:42:20,640 --> 00:42:22,480
Speaker 2: a lot of this completely alone. As far as people

880
00:42:22,480 --> 00:42:24,359
Speaker 2: who understood what we were going through, we had family

881
00:42:24,400 --> 00:42:27,439
Speaker 2: and friends that were very supportive, But in those first

882
00:42:27,480 --> 00:42:30,520
Speaker 2: few years before I found that community, I just held

883
00:42:30,520 --> 00:42:33,080
Speaker 2: on as tired as I could to a self care

884
00:42:33,160 --> 00:42:35,640
Speaker 2: routine I had before we had Kimball, and that was

885
00:42:35,800 --> 00:42:39,120
Speaker 2: a class called Zoomba. It's a group fitness class, yeah,

886
00:42:39,880 --> 00:42:43,000
Speaker 2: where you danced together with other men and women and

887
00:42:43,120 --> 00:42:46,040
Speaker 2: that's your exercise. And so that was something that I

888
00:42:46,160 --> 00:42:50,080
Speaker 2: religiously kept continued doing while I was pregnant with Kimball

889
00:42:50,120 --> 00:42:52,160
Speaker 2: and while all the stuff was happening, and then after

890
00:42:52,200 --> 00:42:54,960
Speaker 2: he was born, and I remember so my husband was

891
00:42:55,040 --> 00:42:57,040
Speaker 2: very supportive and like I was a stay at home mom,

892
00:42:57,040 --> 00:42:59,000
Speaker 2: so he'd come home and then I'd hand the baton

893
00:42:59,000 --> 00:43:01,160
Speaker 2: off to him and go off to my class. And

894
00:43:01,200 --> 00:43:02,640
Speaker 2: there were a couple of weeks where I had to

895
00:43:02,680 --> 00:43:05,920
Speaker 2: miss and I both times, I like had a complete

896
00:43:05,960 --> 00:43:08,520
Speaker 2: meltdown and we were like, that's funny, that's the week

897
00:43:08,640 --> 00:43:11,480
Speaker 2: I didn't go to Zoomba. So at that point we're

898
00:43:11,520 --> 00:43:14,759
Speaker 2: like non negotiable, like I have to go. And it

899
00:43:14,800 --> 00:43:16,319
Speaker 2: was twice a week, so it wasn't like as an

900
00:43:16,360 --> 00:43:18,600
Speaker 2: everyday thing, but that I think that was just enough

901
00:43:18,640 --> 00:43:22,040
Speaker 2: space for me to feel like myself, because as you

902
00:43:22,120 --> 00:43:25,720
Speaker 2: go through these experiences, you do change in like every

903
00:43:25,719 --> 00:43:28,319
Speaker 2: way possible. It really does feel like your previous self

904
00:43:28,360 --> 00:43:32,080
Speaker 2: is almost unrecognizable. So I think having something that was

905
00:43:32,160 --> 00:43:35,000
Speaker 2: like this aspect that I had before and then the

906
00:43:35,120 --> 00:43:38,000
Speaker 2: during and then the after felt very grounding to me

907
00:43:38,320 --> 00:43:41,279
Speaker 2: and very familiar to me. And not only that, but

908
00:43:41,480 --> 00:43:45,040
Speaker 2: the researched benefits of exercise and actually found out recently

909
00:43:45,080 --> 00:43:48,360
Speaker 2: they said that for stress reduction, dancing is the most

910
00:43:48,360 --> 00:43:51,440
Speaker 2: preferred form of exercise, and I was like, there, you

911
00:43:51,480 --> 00:43:55,279
Speaker 2: got it too. Yeah, So I do think it's something

912
00:43:55,320 --> 00:43:57,360
Speaker 2: that's so light and silly in the midst of stuff

913
00:43:57,360 --> 00:43:59,600
Speaker 2: that was so heavy and dark. And I actually remember

914
00:44:00,320 --> 00:44:03,840
Speaker 2: being in class sometimes when we had an extra aggressive song.

915
00:44:04,000 --> 00:44:05,480
Speaker 2: I don't know how else to describe it, but when

916
00:44:05,480 --> 00:44:07,399
Speaker 2: you're like, ah, you're like pounding your feet or whatever

917
00:44:07,400 --> 00:44:10,440
Speaker 2: it is, and I remember tearing up. I don't think

918
00:44:10,480 --> 00:44:12,400
Speaker 2: I was like falling. I wasn't sobbing, but I was

919
00:44:12,440 --> 00:44:14,160
Speaker 2: like crying as I was doing that because it just

920
00:44:14,160 --> 00:44:16,719
Speaker 2: felt so good to almost like releasing the anger through

921
00:44:16,719 --> 00:44:19,279
Speaker 2: this exercise. Too. Of we found out this news and

922
00:44:19,360 --> 00:44:21,560
Speaker 2: just processing it while I was sitting there like just

923
00:44:21,640 --> 00:44:25,440
Speaker 2: dancing along with my peers and sorry. And then recently

924
00:44:25,480 --> 00:44:27,520
Speaker 2: I went back to that class I had. There was

925
00:44:27,560 --> 00:44:29,360
Speaker 2: a couple of years where we didn't I didn't go

926
00:44:29,400 --> 00:44:32,960
Speaker 2: to that one class specifically with that teacher, and then

927
00:44:33,040 --> 00:44:35,359
Speaker 2: I went back again and I was like, oh, this

928
00:44:35,400 --> 00:44:38,040
Speaker 2: feels like going back to my therapist because it has

929
00:44:38,080 --> 00:44:40,799
Speaker 2: brought back so many of those emotions that I processed

930
00:44:40,880 --> 00:44:43,440
Speaker 2: while being in this zumba class, and anyway, that has

931
00:44:43,440 --> 00:44:46,279
Speaker 2: been something that's been really helpful to me. But if

932
00:44:46,280 --> 00:44:50,120
Speaker 2: anyone's listening and also they want some kind of tool

933
00:44:50,200 --> 00:44:53,280
Speaker 2: to help themselves through things like this, I would recommend

934
00:44:53,840 --> 00:44:56,200
Speaker 2: something like their version of zumba. Right, it doesn't need

935
00:44:56,200 --> 00:44:59,320
Speaker 2: to be Zoomba, but something that maybe they enjoyed or

936
00:44:59,320 --> 00:45:01,920
Speaker 2: helped them find lease or connection or whatever it is

937
00:45:01,960 --> 00:45:04,840
Speaker 2: made them feel good in some way previous to this happening,

938
00:45:05,320 --> 00:45:06,840
Speaker 2: and then to see if there's a version of that

939
00:45:06,880 --> 00:45:08,840
Speaker 2: you can keep doing. If you can't do that exactly

940
00:45:09,000 --> 00:45:10,799
Speaker 2: the exact thing, because I think that was like the

941
00:45:10,840 --> 00:45:16,879
Speaker 2: perfect combination to help me feel okay during all of this.

942
00:45:17,840 --> 00:45:19,839
Speaker 1: I love that you had that outlet, and it being

943
00:45:19,920 --> 00:45:22,840
Speaker 1: zoomba just makes it all the more better because working

944
00:45:22,880 --> 00:45:25,719
Speaker 1: out is so good for you. But something about you

945
00:45:25,840 --> 00:45:28,920
Speaker 1: doing zoomba and just having all these experiences, it just

946
00:45:29,000 --> 00:45:31,400
Speaker 1: makes me smile to think, like, that was your outlet.

947
00:45:32,080 --> 00:45:34,759
Speaker 2: I love that, and no one there had any idea, right,

948
00:45:34,760 --> 00:45:36,640
Speaker 2: They're just like I'm just here zoom, and I'm like, oh,

949
00:45:36,680 --> 00:45:39,080
Speaker 2: I'm processing trauma and all the things.

950
00:45:38,920 --> 00:45:40,960
Speaker 1: Like I gotta stop my foot really hard, and don't

951
00:45:41,000 --> 00:45:41,719
Speaker 1: pity me.

952
00:45:41,800 --> 00:45:43,880
Speaker 2: Okay, let me scream for a second.

953
00:45:44,680 --> 00:45:47,719
Speaker 1: Yes, I'm really glad you had the outlet, and I'm

954
00:45:47,719 --> 00:45:49,640
Speaker 1: glad you were able to take care of yourself, and

955
00:45:49,680 --> 00:45:51,800
Speaker 1: not only that you had a partner who is supportive

956
00:45:51,800 --> 00:45:54,440
Speaker 1: in that, because that is also a battle in itself.

957
00:45:54,520 --> 00:45:58,880
Speaker 1: So just really awesome. I always like to end episodes

958
00:45:58,880 --> 00:46:00,600
Speaker 1: and I think I could talk to you for because

959
00:46:01,400 --> 00:46:03,880
Speaker 1: what you're doing in your podcast is so important, but

960
00:46:03,920 --> 00:46:07,920
Speaker 1: beyond that, your experience in life and just crazy sitting

961
00:46:07,920 --> 00:46:09,880
Speaker 1: here and we're both thirty one years old and just

962
00:46:09,960 --> 00:46:13,040
Speaker 1: vastly different life experiences, which I think is so cool.

963
00:46:13,320 --> 00:46:15,720
Speaker 1: I love that this is a beautiful life that you've had,

964
00:46:15,760 --> 00:46:18,680
Speaker 1: and I just I love that, Like I'm sitting here

965
00:46:18,680 --> 00:46:20,640
Speaker 1: and I could genuinely sit here and talk forever, but

966
00:46:20,680 --> 00:46:22,440
Speaker 1: we won't because we've got plenty of things to do.

967
00:46:23,120 --> 00:46:26,800
Speaker 1: So what I like to end episodes with is whether

968
00:46:26,880 --> 00:46:29,520
Speaker 1: it's a piece of advice, maybe it's inspiration, maybe it's

969
00:46:29,560 --> 00:46:31,480
Speaker 1: a topic that we didn't get to and you're really

970
00:46:31,520 --> 00:46:33,839
Speaker 1: heavy on your heart, whatever it may be. I give

971
00:46:33,880 --> 00:46:36,200
Speaker 1: the floor to you and we close out our episode

972
00:46:36,200 --> 00:46:38,280
Speaker 1: that way, so the floor is yours.

973
00:46:39,640 --> 00:46:43,600
Speaker 2: I think one thing that I've learned throughout my experience

974
00:46:43,600 --> 00:46:46,040
Speaker 2: with my son and throughout life in general with other

975
00:46:46,040 --> 00:46:49,520
Speaker 2: hard things, is really what I've built the podcast on

976
00:46:49,560 --> 00:46:54,080
Speaker 2: as well, is the importance of talking about or at

977
00:46:54,160 --> 00:46:58,640
Speaker 2: least naming your own feelings and removing the shame from them.

978
00:46:58,719 --> 00:47:01,200
Speaker 2: I think a lot of people feel a lot it's

979
00:47:01,239 --> 00:47:03,280
Speaker 2: pretty cringey to be like, oh, it was the worst

980
00:47:03,320 --> 00:47:05,920
Speaker 2: possible news I could receive that he would be disabled.

981
00:47:05,920 --> 00:47:08,799
Speaker 2: That doesn't sound good, but it doesn't feel that great either,

982
00:47:08,880 --> 00:47:10,560
Speaker 2: especially as a parent, And we were like, I love

983
00:47:10,600 --> 00:47:13,920
Speaker 2: this child, and I had these feelings that were so dark,

984
00:47:14,239 --> 00:47:16,719
Speaker 2: and I feel shameful about it. But I think it

985
00:47:16,800 --> 00:47:19,120
Speaker 2: is so key to be able to talk about it

986
00:47:19,120 --> 00:47:22,120
Speaker 2: with a trusted person, to write it out, to allow

987
00:47:22,160 --> 00:47:25,360
Speaker 2: yourself to acknowledge those emotions, on those feelings, and to

988
00:47:25,400 --> 00:47:28,520
Speaker 2: realize that those are very normal. I would venture to

989
00:47:28,560 --> 00:47:31,360
Speaker 2: guess any kind of emotion or feeling that a parent

990
00:47:31,400 --> 00:47:34,200
Speaker 2: has around their child with the disability or medical complexity,

991
00:47:35,000 --> 00:47:37,319
Speaker 2: it has been There's no feeling that's not been felt

992
00:47:37,360 --> 00:47:40,840
Speaker 2: by someone else before. And I think once you shine

993
00:47:40,840 --> 00:47:43,640
Speaker 2: a light on those emotions by sharing with others or

994
00:47:43,680 --> 00:47:45,759
Speaker 2: writing it down or just accepting it in some way,

995
00:47:46,280 --> 00:47:48,359
Speaker 2: I think it makes it so it isn't in this dark,

996
00:47:48,400 --> 00:47:51,200
Speaker 2: scary spot anymore. It has light on it, and it's like,

997
00:47:51,200 --> 00:47:52,600
Speaker 2: you know what it is, what it is, this is

998
00:47:53,080 --> 00:47:55,560
Speaker 2: this is how I experienced it, and that's okay. And

999
00:47:55,600 --> 00:47:57,720
Speaker 2: so I would hope that for people that they would

1000
00:47:57,760 --> 00:48:01,160
Speaker 2: have a safe space to be able to express those things,

1001
00:48:01,320 --> 00:48:03,879
Speaker 2: or at least be able to see other people expressing them.

1002
00:48:03,880 --> 00:48:07,000
Speaker 2: That's one thing that again I have found to be

1003
00:48:07,040 --> 00:48:09,239
Speaker 2: really powerful, like with the podcast and then other ways

1004
00:48:09,280 --> 00:48:12,680
Speaker 2: of sharing other people talking on social media, is the

1005
00:48:12,719 --> 00:48:16,160
Speaker 2: power of hearing someone else talk about their story or

1006
00:48:16,200 --> 00:48:19,839
Speaker 2: write about it, and then to see things that you

1007
00:48:19,880 --> 00:48:22,160
Speaker 2: resonate with and to be like, oh, I'm not alone,

1008
00:48:22,440 --> 00:48:25,120
Speaker 2: and almost like seeing someone else express that can feel

1009
00:48:25,160 --> 00:48:27,440
Speaker 2: a kin to you expressing it and be like that

1010
00:48:27,440 --> 00:48:30,160
Speaker 2: feels really good to have words put to that shameful emotion.

1011
00:48:31,000 --> 00:48:33,879
Speaker 2: And so I would encourage parents and anyone going through

1012
00:48:33,880 --> 00:48:37,960
Speaker 2: something hard to find that space and the space internally

1013
00:48:38,080 --> 00:48:40,160
Speaker 2: to really sit with those emotions and to show a

1014
00:48:40,160 --> 00:48:41,879
Speaker 2: little self compassion for where you are.

1015
00:48:43,000 --> 00:48:45,719
Speaker 1: Yes, that was a great way for us to end.

1016
00:48:45,960 --> 00:48:48,080
Speaker 1: It reminds me of something I always yell at myself

1017
00:48:48,120 --> 00:48:50,759
Speaker 1: sometimes when I live in my shame where I don't

1018
00:48:50,800 --> 00:48:53,800
Speaker 1: allow myself to feel things. I'm like, feel your feelings.

1019
00:48:53,840 --> 00:48:55,279
Speaker 1: I just yell at myself in the mirror. I'm like,

1020
00:48:55,400 --> 00:48:58,320
Speaker 1: just feel it and it'll be okay. So that feels

1021
00:48:58,360 --> 00:49:00,680
Speaker 1: like an appropriate moment for this dude to yell at

1022
00:49:00,680 --> 00:49:04,000
Speaker 1: yourself in the mirror and be like, feel your feelings. Yes,

1023
00:49:04,200 --> 00:49:07,440
Speaker 1: for sure, Oh Madamin, thank you for joining me, Thanks

1024
00:49:07,440 --> 00:49:09,920
Speaker 1: for sharing your story and doing what you do. You

1025
00:49:09,920 --> 00:49:12,239
Speaker 1: guys can check out her podcast, The Rare Life, and

1026
00:49:12,880 --> 00:49:15,000
Speaker 1: I'll be sure to put her social media and stuff

1027
00:49:15,040 --> 00:49:16,480
Speaker 1: and here so you can follow her and reach out

1028
00:49:16,520 --> 00:49:18,799
Speaker 1: to her too. But thank you for your time, thanks

1029
00:49:18,840 --> 00:49:21,120
Speaker 1: for being here, and I really love what you're doing.

1030
00:49:21,760 --> 00:49:23,440
Speaker 2: Thank you so much. Has been such an honor.

1031
00:49:23,920 --> 00:49:25,759
Speaker 1: I'm so happy you're here each week listening to these

1032
00:49:25,800 --> 00:49:29,120
Speaker 1: stories and hopefully healing on your own journey by way

1033
00:49:29,200 --> 00:49:33,719
Speaker 1: of hearing others' potentially shared experiences. That's what this whole

1034
00:49:33,719 --> 00:49:36,440
Speaker 1: podcast is about. Be sure to subscribe and give the

1035
00:49:36,480 --> 00:49:39,160
Speaker 1: podcast five Stars I Love y'all. Talk to you next

1036
00:49:39,160 --> 00:49:40,440
Speaker 1: week with Sarah Todd Hammer