WEBVTT - Ep. 42; Raising A Child With Medical Complexities & Disabilities

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<v Speaker 1>Personal fuels mean for these next two episodes, we're focused

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<v Speaker 1>on disabilities and rare diseases. First, I'm bringing on Madeline Cheney,

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<v Speaker 1>who is the host of The Rare Life podcast and

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<v Speaker 1>mom of a sweet kiddo who was born with a

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<v Speaker 1>rare disease. She's sharing her experience from the moment she

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<v Speaker 1>found out in pregnancy to where they are today. Then

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<v Speaker 1>next week, I'm bringing on Sarah Todd Hammer to share

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<v Speaker 1>her story. She's a three time published author, speaker, and

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<v Speaker 1>disability advocate. She has a very unique story and tells

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<v Speaker 1>her disability experience from a place of vulnerability and honesty.

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<v Speaker 1>I'm so excited to share both of their stories with you. Also,

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<v Speaker 1>let's get into it. Joining me today is Madeline Cheeney.

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<v Speaker 1>You host a podcast called The Rare Life for parents

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<v Speaker 1>of children with rare conditions, and I'm so excited to

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<v Speaker 1>talk to you today all about that, your story and everything.

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<v Speaker 1>So Hi, thanks for joining me.

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<v Speaker 2>Thanks so much for having me. I'm so excited to chat,

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<v Speaker 2>I know.

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<v Speaker 1>And I'm really excited to share your story, and I

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<v Speaker 1>think that's the best place to start. I want to

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<v Speaker 1>hear why even this podcast exists and the reason for

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<v Speaker 1>it from your perspective and what's happened in your life

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<v Speaker 1>to be where you are right now.

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<v Speaker 2>Yeah, So it all starts with my son, Kimball. He

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<v Speaker 2>is right now, he's almost seven, and we have an

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<v Speaker 2>older daughter, Wendy. So when I got pregnant with Kimball,

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<v Speaker 2>she was two, and we just thought we just have

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<v Speaker 2>a run of the mill life with run of the

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<v Speaker 2>mill kids, not including disabilities, because you don't really think

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<v Speaker 2>about that. And we had found out at that point

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<v Speaker 2>I was going in for my twenty week ultrasound, which

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<v Speaker 2>is where a lot of these stories start. Going into that,

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<v Speaker 2>I was like, Oh, it's going to be a super

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<v Speaker 2>boring appointment. There's we're not really going to learn anything

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<v Speaker 2>because we had accidentally found out he was a boy

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<v Speaker 2>at thirteen weeks, and so I was like, we're not

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<v Speaker 2>going to find out anything. So I told my husband, like,

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<v Speaker 2>you know what, don't come to the appointment. It'll be boring.

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<v Speaker 2>Just go to work. So this was the first appointment

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<v Speaker 2>he didn't go to with me, which in hindsight, I'm like, oh,

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<v Speaker 2>I wish he would have been there. But I brought

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<v Speaker 2>our two year old to that appointment, and as the

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<v Speaker 2>ultrasound tech was scanning me. I was like, oh, she's

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<v Speaker 2>being pretty quiet. That's funny. I'm used to like with

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<v Speaker 2>my daughter. It was a very lighthearted chatting without the

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<v Speaker 2>baby and are you excited and are you excited to

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<v Speaker 2>find out if it's a boy or girl? But it

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<v Speaker 2>was just silent, and I was like wanting to make

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<v Speaker 2>small talks. I was like so like asking her about

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<v Speaker 2>her job, and she was like, normally I work in

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<v Speaker 2>this high risk clinic downtown, but I come here once

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<v Speaker 2>a week. And I was like, oh my gosh, that

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<v Speaker 2>must be such a hard job to deliver hard news

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<v Speaker 2>to these moms. She was like, it's not my job.

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<v Speaker 2>The doctor does that. And I was like okay. And

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<v Speaker 2>I was like laying there and she's pretty hard to

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<v Speaker 2>get it's hard to get her talking, but she was.

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<v Speaker 2>While we were chatting about this, she was measuring and

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<v Speaker 2>remeasuring different things she was finding on there that were

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<v Speaker 2>definitely red flags, but she couldn't say anything because she's

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<v Speaker 2>not the doctor. I'm just laying there thinking everything's fine.

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<v Speaker 2>And then she was like, Okay, the doctor will look

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<v Speaker 2>at the ultra sound results and then we'll bring you

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<v Speaker 2>in to talk to him. I was like, that's weird.

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<v Speaker 2>Like with her daughter, he just called us a few

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<v Speaker 2>days later. I was like, Yep, everything was great and

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<v Speaker 2>that was that. So I was laying there thinking like,

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<v Speaker 2>could there be something going on? No, there's nothing wrong,

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<v Speaker 2>because I think for so many of us that do

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<v Speaker 2>have disabled children, it's you never really think it's gonna

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<v Speaker 2>happen to you. You're like, that happens to other people,

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<v Speaker 2>ohll never get it's not me. So I definitely was

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<v Speaker 2>in that camp at that point, or I thought I was.

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<v Speaker 2>And a little bit later they brought us into the

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<v Speaker 2>examination room with the doctor. I looked at his face

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<v Speaker 2>like trying to get a clue, and I was like,

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<v Speaker 2>oh no, like this is not good because he looked

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<v Speaker 2>pretty serious and he sat us down, or sat me down.

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<v Speaker 2>My daughter's toddling around, and he was like, it's hard

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<v Speaker 2>to know for sure, but we think your son has

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<v Speaker 2>down syndrome. And I just remember that those words they

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<v Speaker 2>changed my life forever. It just everything shifted. I felt

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<v Speaker 2>like the whole world was like teetering on its side.

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<v Speaker 2>I was like, what is happening right now? When I

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<v Speaker 2>sat in a daze while he was explaining the different

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<v Speaker 2>markers that looked like Down syndrome. For example, he had

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<v Speaker 2>short limbs and he didn't have a prominent nose bridge.

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<v Speaker 2>There just really wasn't any There's just like a little

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<v Speaker 2>tiny nub, which super cute. We have lots of pictures

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<v Speaker 2>of those. He was like, we're gonna test you and

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<v Speaker 2>we can find out if he has Down syndrome, and

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<v Speaker 2>we'll let you know within a week. And we were like.

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<v Speaker 2>I took my daughter and we were walking out, and

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<v Speaker 2>I just remember like feeling just like everything felt so surreal.

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<v Speaker 1>And I say, what was your first like he tells

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<v Speaker 1>you that, and what are your emotions and thoughts going

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<v Speaker 1>through your head? Because you did go into this being

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<v Speaker 1>like this is a normal appointment. My husband's not here. Ye,

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<v Speaker 1>holy crap, I just got really big news.

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<v Speaker 2>Yeah. I really just felt like my whole world had

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<v Speaker 2>flipped upside down. I just felt like, oh, this is

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<v Speaker 2>so hard, Like this is going to be such a

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<v Speaker 2>hard life. I think that was really what the first

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<v Speaker 2>thing that came to my mind was. And I remember

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<v Speaker 2>as I was processing and it was really like washing

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<v Speaker 2>over me. For the next few hours. After that appointment,

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<v Speaker 2>I realizing, oh my gosh, I've been writing letters to

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<v Speaker 2>this unborn child, and he'll never read them. So I

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<v Speaker 2>had these assumptions or the little knowledge that I had

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<v Speaker 2>about people with Down syndrome. I'm not saying that was

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<v Speaker 2>accurate or not, but that was what I was thinking of.

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<v Speaker 2>Oh my gosh, he'll never be able to read these

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<v Speaker 2>and I will never be empty nesters. That was another

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<v Speaker 2>thought that immediately came to my mind, of this lifelong care.

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<v Speaker 2>We will never just this life that I expected, This

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<v Speaker 2>trajectory that we felt like we were on was suddenly

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<v Speaker 2>shifted completely and all I saw and my future really

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<v Speaker 2>was hardship. I was like, this is gonna be so hard,

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<v Speaker 2>It's gonna be so much of work, and I'm never

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<v Speaker 2>going to be done. And I think I'm naturally a

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<v Speaker 2>pretty independent person, and so the idea of having a

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<v Speaker 2>child is dependent on you for life was really hard

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<v Speaker 2>for me to wrap my head around.

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<v Speaker 1>Yeah, And I don't think a lot of people consider that,

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<v Speaker 1>because you're really thinking about these first few moments and

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<v Speaker 1>just like getting the news and the kind of shock

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<v Speaker 1>of it all to your point, nobody goes into it

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<v Speaker 1>expecting that it's going to happen to them, and then

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<v Speaker 1>they also as they start playing it out on their head,

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<v Speaker 1>have this thought of, oh, this is a child that

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<v Speaker 1>will likely need my help for life in one way

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<v Speaker 1>or another. Even if they become independent, even if all

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<v Speaker 1>these things play out, there's still always going to be

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<v Speaker 1>probably a need for me. And that has to be

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<v Speaker 1>terrifying in just itself alone, because probably what you were

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<v Speaker 1>imagining your future after having kids feels like that gets

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<v Speaker 1>taken away from you.

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<v Speaker 2>Yeah, yeah, for sure, there like grieving this whole life

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<v Speaker 2>I thought we were going to have and I thought

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<v Speaker 2>he would have and oh there was something that you

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<v Speaker 2>just said. I think like one of the reasons too

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<v Speaker 2>that we didn't this wasn't even on our radar, is

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<v Speaker 2>that we didn't know anyone with a disabled child. Yes,

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<v Speaker 2>I could, like my brain started bringing up, like, oh,

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<v Speaker 2>I think didn't this one cousin once say that, like, oh,

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<v Speaker 2>I think she has a disabled child. But it was

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<v Speaker 2>people that I was not close to. So no one

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<v Speaker 2>in my immediate circles, none of my family members, none

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<v Speaker 2>of my close friends had disabled children, And so I

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<v Speaker 2>think that was one reason that I wasn't even you know,

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<v Speaker 2>it wasn't on my radar at all. But that also

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<v Speaker 2>meant it was so lonely. I felt suddenly just so

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<v Speaker 2>alone in this, and I was like, no one understands.

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<v Speaker 2>I called my mom and I called my siblings, and

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<v Speaker 2>I was like, I was like, oh, they think he

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<v Speaker 2>has down syndrome. And the things that they said in

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<v Speaker 2>response it wasn't bad. I'm sure I would have said

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<v Speaker 2>the same thing, but it was just very clear to

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<v Speaker 2>me if they have no idea what this is like.

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<v Speaker 2>And again, that was just such a terrifying thought. I

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<v Speaker 2>was very young too, I was twenty four years old,

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<v Speaker 2>and so I was just, I don't know, very naive

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<v Speaker 2>to hard things in life, and so this was really

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<v Speaker 2>a very rude awakening to like things that can be

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<v Speaker 2>really difficult in life and complicated.

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<v Speaker 1>Okay, and now I'm like placing this and this is

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<v Speaker 1>just so crazy to me. Are you I'd never ask age,

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<v Speaker 1>but I'm just like, are you thirty one?

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<v Speaker 2>Yeah? I am thirty one.

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<v Speaker 1>I'm thirty one, and I'm sitting here and I'm not married,

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<v Speaker 1>i don't have kids, but holy crap, that's the first

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<v Speaker 1>thing that comes to my mind. Not only is this

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<v Speaker 1>happening and this is big news, and yes, you have

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<v Speaker 1>another child, so it wasn't like this was a okay,

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<v Speaker 1>we were playing, this is part of the goal, but

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<v Speaker 1>you were so young for that experience. Yeah, was that

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<v Speaker 1>another thing that was going through your head. I'm really young,

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<v Speaker 1>and I don't think I have the preparation to do

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<v Speaker 1>what this is going to require of me.

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<v Speaker 2>For sure. That was one of my first thoughts. Honestly,

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<v Speaker 2>it was I'm too young for a child with Down syndrome,

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<v Speaker 2>because that's what you hear, It's like the advanced maternal

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<v Speaker 2>age and all of that. I was like, I'm twenty

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<v Speaker 2>four years old, like this is not supposed to be

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<v Speaker 2>happening to me right now, which of course it does

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<v Speaker 2>happen to younger people. But that was like this assumption

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<v Speaker 2>too that I felt almost this like immunity because I

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<v Speaker 2>was so young. And then yeah, I mean there were

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<v Speaker 2>so many times throughout our son's life too, as after

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<v Speaker 2>he was born and at with different things that happened

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<v Speaker 2>that were really hard. I remember thinking like I'm too

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<v Speaker 2>young for this, Like I'm way too young for this,

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<v Speaker 2>and I know, life just happens, right, it's not it's

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<v Speaker 2>indifferent to your age and your experience. But it's interesting

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<v Speaker 2>because I was talking to my mom about this recently,

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<v Speaker 2>and she was like, Oh, I had that thought a lot.

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<v Speaker 2>She's way too young to have to go through these things.

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<v Speaker 2>And so I do feel like for being thirty one

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<v Speaker 2>years old, I relate a lot with people who are older,

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<v Speaker 2>like I have a lot of my best friends are

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<v Speaker 2>forties and their fifties, because I think like the life

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<v Speaker 2>experience that I've had up to this point have made

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<v Speaker 2>me grow up more than I would have. Undoubtedly I've

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<v Speaker 2>grown up a lot more than I would have without Kimball,

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<v Speaker 2>and are experiences with.

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<v Speaker 1>Him, Yeah, absolutely, And I could imagine that would just

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<v Speaker 1>gosh send you on a completely different journey on so

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<v Speaker 1>many levels. When you go back and you tell your

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<v Speaker 1>husband this, that first conversation that you guys are having,

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<v Speaker 1>is he reacting how you expected? What was that conversation

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<v Speaker 1>like in those first few days moments, He's very even keeled,

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<v Speaker 1>That's one way I describe him. So he's very much

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<v Speaker 1>like the stoic, like stable one, and I'm not. I'm

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<v Speaker 1>like more of the like passionate, reactive, over dramatic person

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<v Speaker 1>in our relationship.

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<v Speaker 2>And so when I called him, I buckled in. My

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<v Speaker 2>daughter was shaking hands and as soon as I came

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<v Speaker 2>out of the office, I was sobbing, and so I,

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<v Speaker 2>like with trembling fingers, tried to call him as I

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<v Speaker 2>got into the front seat to tell him this, and

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<v Speaker 2>when he answered, it took me a little bit to

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<v Speaker 2>compose myself enough to tell him, and so he kind

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<v Speaker 2>of sat there, Oh, my gosh, what is she about

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<v Speaker 2>to say, because he knew I was at this appointment,

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<v Speaker 2>And I was like, they think that they think that

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<v Speaker 2>Kimball has Down syndrome, because at that point we'd already

0:11:02.880 --> 0:11:04.520
<v Speaker 2>named him, we already knew he was a boy and everything.

0:11:04.559 --> 0:11:08.120
<v Speaker 2>We were really connected to him. And he was like, oh,

0:11:08.200 --> 0:11:09.560
<v Speaker 2>I thought you were going to tell me that you

0:11:09.559 --> 0:11:12.560
<v Speaker 2>had a miscarriage, because that was what was going through

0:11:12.640 --> 0:11:15.440
<v Speaker 2>his head hearing me sobbing like this. And then I

0:11:15.600 --> 0:11:17.880
<v Speaker 2>said something that I feel a lot of shame about now,

0:11:17.920 --> 0:11:20.160
<v Speaker 2>but I have also a lot of self compassion for

0:11:20.280 --> 0:11:21.760
<v Speaker 2>what I was going through at that point. But I

0:11:21.840 --> 0:11:25.760
<v Speaker 2>said to him, that would have been easier. And I

0:11:25.800 --> 0:11:28.200
<v Speaker 2>think at that point I was thinking about if we

0:11:28.240 --> 0:11:30.520
<v Speaker 2>had lost him, I would go through the grief and

0:11:30.600 --> 0:11:32.840
<v Speaker 2>it would be really traumatic and hard, and then we

0:11:32.840 --> 0:11:37.319
<v Speaker 2>would move forward, which in hindsight, now, I don't think

0:11:37.320 --> 0:11:39.200
<v Speaker 2>that's how. It would not have been that simple. It'd

0:11:39.200 --> 0:11:40.920
<v Speaker 2>have been a huge loss. I was already twenty weeks

0:11:40.920 --> 0:11:43.360
<v Speaker 2>at this point, But that's what that's how I viewed it.

0:11:43.440 --> 0:11:45.840
<v Speaker 2>Like we would grieve it, we'd be really upset, and

0:11:45.880 --> 0:11:47.599
<v Speaker 2>then we'd have another child, and then that child to

0:11:47.679 --> 0:11:50.760
<v Speaker 2>be like quote unquote normal whatever that means, and then

0:11:51.000 --> 0:11:53.640
<v Speaker 2>independent and all the things. But this life that we

0:11:53.720 --> 0:11:56.160
<v Speaker 2>have with our son Kimball is going to be so

0:11:56.280 --> 0:11:59.080
<v Speaker 2>difficult and it's going to be again this lifelong thing.

0:11:59.120 --> 0:12:01.439
<v Speaker 2>And at least that's how I was perceiving at that point.

0:12:02.040 --> 0:12:05.480
<v Speaker 2>And yeah, I think he felt relief that wasn't that

0:12:05.600 --> 0:12:08.520
<v Speaker 2>we didn't lose him, and then he remained like this

0:12:08.720 --> 0:12:11.320
<v Speaker 2>the stable one in our relationship. And it's really interesting.

0:12:11.360 --> 0:12:15.120
<v Speaker 2>We've talked about it since about and with several other

0:12:15.200 --> 0:12:17.960
<v Speaker 2>dads too. We actually did a whole episode about the

0:12:18.520 --> 0:12:20.560
<v Speaker 2>kind of the dad perspective and how that's different than

0:12:20.559 --> 0:12:23.880
<v Speaker 2>the mom's when you have disabled and medically complex children,

0:12:24.040 --> 0:12:26.960
<v Speaker 2>and it was pretty unanimous among them. You feel like

0:12:27.000 --> 0:12:29.199
<v Speaker 2>you have to be the strong one because of cultural

0:12:29.360 --> 0:12:32.560
<v Speaker 2>and societal norms of I have to keep things together,

0:12:32.720 --> 0:12:34.360
<v Speaker 2>I need to make sure the mom's okay and the

0:12:34.400 --> 0:12:37.160
<v Speaker 2>baby's okay, and so really shoving down their own feelings

0:12:37.200 --> 0:12:39.960
<v Speaker 2>and emotions and not feeling safe enough to struggle. I

0:12:39.960 --> 0:12:41.800
<v Speaker 2>felt like I could struggle. I had all the permission

0:12:41.840 --> 0:12:44.000
<v Speaker 2>to struggle, and I don't think he had that same

0:12:44.440 --> 0:12:47.200
<v Speaker 2>safety And I feel sad about that now.

0:12:48.559 --> 0:12:51.360
<v Speaker 1>Well. And it's true though, because in the very beginning

0:12:51.440 --> 0:12:54.280
<v Speaker 1>stages from all of my mom friends, I've heard you

0:12:54.360 --> 0:12:57.880
<v Speaker 1>have this just this such emotional connection because you're growing

0:12:57.920 --> 0:13:00.760
<v Speaker 1>a human inside of you, and it's a different experience

0:13:00.760 --> 0:13:04.000
<v Speaker 1>than the men are already having, So I could imagine

0:13:04.520 --> 0:13:08.319
<v Speaker 1>that experience would stay that way, especially given a state

0:13:08.480 --> 0:13:10.800
<v Speaker 1>like this. So that makes sense, like in my brain

0:13:10.840 --> 0:13:14.559
<v Speaker 1>at least of the experiences that people have. But it's

0:13:14.559 --> 0:13:19.160
<v Speaker 1>also not fair, right, because dads also deserve to have

0:13:19.200 --> 0:13:23.679
<v Speaker 1>those emotions and feelings about a very life altering moment.

0:13:25.160 --> 0:13:27.480
<v Speaker 1>But and it hurts you in a way that they

0:13:27.559 --> 0:13:30.160
<v Speaker 1>feel like they have to be that way. So I'm

0:13:30.200 --> 0:13:32.400
<v Speaker 1>happy that you were giving them the space to show that.

0:13:32.440 --> 0:13:37.360
<v Speaker 1>So hopefully future dads in the situation can feel something

0:13:37.400 --> 0:13:39.720
<v Speaker 1>for that and not feel like they have to be strong,

0:13:40.240 --> 0:13:43.840
<v Speaker 1>because I think at least. I would imagine for both

0:13:43.840 --> 0:13:45.480
<v Speaker 1>of you guys, it would take both of you to

0:13:45.520 --> 0:13:47.040
<v Speaker 1>be strong, not just one of you.

0:13:48.000 --> 0:13:49.880
<v Speaker 2>Yeah, for sure, I think it would have been a

0:13:49.920 --> 0:13:52.320
<v Speaker 2>lot healthier than it wouldn't have been. Oh, I'm the

0:13:52.320 --> 0:13:55.440
<v Speaker 2>one who freaks out and processes everything really messy, and

0:13:55.480 --> 0:13:58.920
<v Speaker 2>you just are it's there, it's all bottled up inside. Right.

0:13:58.960 --> 0:14:01.120
<v Speaker 2>It's not like they aren't experience those emotions as just

0:14:02.440 --> 0:14:04.840
<v Speaker 2>they can't fully if you don't feel like you're allowed to.

0:14:07.800 --> 0:14:10.360
<v Speaker 1>I want to know now to So this happens, this

0:14:10.480 --> 0:14:15.480
<v Speaker 1>conversation happens, and obviously you have him and life is changed.

0:14:15.480 --> 0:14:19.560
<v Speaker 1>So did he end up having what they expected or

0:14:19.680 --> 0:14:23.400
<v Speaker 1>was it something else? What happened as that course changed?

0:14:23.400 --> 0:14:27.440
<v Speaker 1>Because also they're predicting this and based on numbers and

0:14:27.520 --> 0:14:30.000
<v Speaker 1>what they're seeing on sonograms, and I know that can

0:14:30.120 --> 0:14:33.440
<v Speaker 1>change as they're born and other things developed. So what

0:14:33.640 --> 0:14:35.440
<v Speaker 1>happened after he was born?

0:14:36.480 --> 0:14:39.560
<v Speaker 2>Actually it was a week later after this ultrasound that

0:14:39.720 --> 0:14:42.640
<v Speaker 2>the test results came back negative for Down syndrome. And

0:14:42.680 --> 0:14:44.600
<v Speaker 2>so I think this really set the precedents too of

0:14:44.640 --> 0:14:47.160
<v Speaker 2>a life just full of roller coasters, and really that's

0:14:47.200 --> 0:14:49.000
<v Speaker 2>I think that's one thing that you've just surrendered to

0:14:49.200 --> 0:14:50.680
<v Speaker 2>once you get used to one idea and then all

0:14:50.720 --> 0:14:52.320
<v Speaker 2>of a sudden it's a whole different thing, and just

0:14:52.360 --> 0:14:53.920
<v Speaker 2>being like, you know what, this is how it's going

0:14:54.000 --> 0:14:55.840
<v Speaker 2>to be from here on out. And that really was

0:14:55.920 --> 0:14:57.560
<v Speaker 2>the case for us for the first few years of

0:14:57.560 --> 0:15:00.600
<v Speaker 2>his life too. But we because it came back negative,

0:15:00.880 --> 0:15:04.080
<v Speaker 2>the doctor was like, it's probably something very rare because

0:15:04.120 --> 0:15:07.280
<v Speaker 2>it tested for like the twelve or twenty round whatever

0:15:07.360 --> 0:15:10.760
<v Speaker 2>number it is most common abnormalities, you know, in birth.

0:15:10.760 --> 0:15:12.640
<v Speaker 2>And at that point we were launched into the world

0:15:12.680 --> 0:15:15.040
<v Speaker 2>of rare and that was really scary to be like, Okay,

0:15:15.240 --> 0:15:18.120
<v Speaker 2>like I first, I got launched into this like mini

0:15:18.440 --> 0:15:22.240
<v Speaker 2>community subset of people, or like the down syndrome community,

0:15:22.320 --> 0:15:23.800
<v Speaker 2>or there are actually a lot of like within the

0:15:23.840 --> 0:15:27.800
<v Speaker 2>world of disability that's a very prevalent, robust community. And

0:15:27.840 --> 0:15:30.240
<v Speaker 2>so then to suddenly be like, oh, actually you don't

0:15:30.240 --> 0:15:32.160
<v Speaker 2>belong here. You're gonna we're gonna shuffle you out into

0:15:32.160 --> 0:15:35.360
<v Speaker 2>this other corner that's even more isolated from culture and

0:15:35.400 --> 0:15:38.600
<v Speaker 2>your friends and everyone around you. And during the course

0:15:38.680 --> 0:15:41.320
<v Speaker 2>of the next few months of pregnancy with him, we

0:15:41.400 --> 0:15:43.920
<v Speaker 2>had lots and lots of ultra sounds. So I got

0:15:43.920 --> 0:15:46.880
<v Speaker 2>a lot of baby pictures of him, which was one perk.

0:15:47.120 --> 0:15:49.440
<v Speaker 2>But they were like, we think he has this really

0:15:49.520 --> 0:15:53.560
<v Speaker 2>rare condition. It's called condor displaysia punk Tata xling type one,

0:15:54.120 --> 0:15:55.720
<v Speaker 2>which is just a little general.

0:15:55.600 --> 0:15:59.000
<v Speaker 1>Because you're like, okay, so what does that mean exactly?

0:15:59.080 --> 0:16:01.720
<v Speaker 2>And if you translate the word over directly, one of

0:16:01.720 --> 0:16:04.160
<v Speaker 2>the things is that it says people with this syndrome

0:16:04.200 --> 0:16:06.640
<v Speaker 2>they have polka dots in their joints, which is what

0:16:06.680 --> 0:16:09.600
<v Speaker 2>you can see in ultrasound. It doesn't really affect them

0:16:10.000 --> 0:16:12.560
<v Speaker 2>like functionally, but that was one way they're like, oh,

0:16:12.600 --> 0:16:14.320
<v Speaker 2>this is a marker for the syndrome, and then he's

0:16:14.360 --> 0:16:18.120
<v Speaker 2>checking all these other boxes. And so that diagnosis ended

0:16:18.160 --> 0:16:20.800
<v Speaker 2>up being confirmed after he was born, and so we

0:16:20.880 --> 0:16:22.920
<v Speaker 2>learned that there were one hundred and twenty five other

0:16:23.120 --> 0:16:25.760
<v Speaker 2>people in the world with confirmed cases of this, and

0:16:25.840 --> 0:16:30.080
<v Speaker 2>so ultra rare, very little ever in the year or

0:16:31.320 --> 0:16:38.200
<v Speaker 2>I think ever documented. Wow, And so yeah, and we've

0:16:38.280 --> 0:16:41.480
<v Speaker 2>learned later too, because it's with these rare diseases you

0:16:41.600 --> 0:16:44.160
<v Speaker 2>find out more. In the best cases, you learn more

0:16:44.200 --> 0:16:47.400
<v Speaker 2>and more as time goes on, and we've learned recently

0:16:47.520 --> 0:16:50.840
<v Speaker 2>with new research that's come up that oftentimes these babies

0:16:50.880 --> 0:16:54.480
<v Speaker 2>die before they're born due to brain bleeds that often

0:16:54.520 --> 0:16:57.880
<v Speaker 2>are not caught before birth, and he luckily did not

0:16:58.040 --> 0:17:01.240
<v Speaker 2>have that symptom, and that's why he was born alive.

0:17:01.800 --> 0:17:03.560
<v Speaker 2>But we knew that there was a high chance of

0:17:03.600 --> 0:17:06.080
<v Speaker 2>them of him passing away before birth, and so that

0:17:06.240 --> 0:17:10.520
<v Speaker 2>was also this whole other layer where before it was like, oh, disabilities,

0:17:10.640 --> 0:17:12.600
<v Speaker 2>that's really hard and that's different, and it has the

0:17:12.640 --> 0:17:14.560
<v Speaker 2>stigma and I'm not sure how to help him and

0:17:14.600 --> 0:17:16.040
<v Speaker 2>get all the support we need and it'll be so

0:17:16.119 --> 0:17:18.959
<v Speaker 2>much work for me. But then and oftentimes I do

0:17:19.040 --> 0:17:22.680
<v Speaker 2>have heart abnormalities and that's scary too. But it really

0:17:22.800 --> 0:17:25.720
<v Speaker 2>wasn't the medical side really wasn't a part of this yet.

0:17:25.760 --> 0:17:29.680
<v Speaker 2>And then when we got that diagnosis, it was like, oh,

0:17:29.920 --> 0:17:32.560
<v Speaker 2>we are going to help this child fight for his life.

0:17:32.560 --> 0:17:35.960
<v Speaker 2>That's what this is. And so we immediately had very

0:17:36.040 --> 0:17:38.200
<v Speaker 2>specialists that were meeting with us and talking about the

0:17:38.200 --> 0:17:40.280
<v Speaker 2>different interventions they would do once he was born and

0:17:40.320 --> 0:17:43.280
<v Speaker 2>what it would likely be like. And they were told

0:17:43.359 --> 0:17:45.840
<v Speaker 2>us we had to deliver at the specific hospital because

0:17:45.840 --> 0:17:48.000
<v Speaker 2>it had the highest level nik you that was most

0:17:48.040 --> 0:17:50.600
<v Speaker 2>likely to help him survive, and so it just really

0:17:50.680 --> 0:17:52.240
<v Speaker 2>and again like I just felt, I was like, I'm

0:17:52.280 --> 0:17:54.760
<v Speaker 2>so young. I'm so young to be dealing with this

0:17:54.800 --> 0:17:57.359
<v Speaker 2>stuff like this is so scary something you never think

0:17:57.400 --> 0:17:59.320
<v Speaker 2>you're going to be facing in your life.

0:18:00.119 --> 0:18:04.480
<v Speaker 1>Yeah, you're getting all of this information, which I would

0:18:04.560 --> 0:18:07.600
<v Speaker 1>think is very overwhelming because you don't understand any of it.

0:18:07.680 --> 0:18:09.919
<v Speaker 1>You're going to specialists, You're probably dealing with a lot

0:18:09.960 --> 0:18:12.040
<v Speaker 1>of medical bills that you weren't prepared for in the

0:18:12.080 --> 0:18:16.240
<v Speaker 1>first place. You are being talked to about something that

0:18:16.280 --> 0:18:18.399
<v Speaker 1>you're growing inside of you that may not make it,

0:18:18.440 --> 0:18:20.160
<v Speaker 1>but if it does, it may not make it later.

0:18:20.280 --> 0:18:24.040
<v Speaker 1>And you're sitting here just having so many variations. You

0:18:24.160 --> 0:18:27.840
<v Speaker 1>mentioned the roller coaster, but Madeline, this might be the bumpiest,

0:18:27.840 --> 0:18:31.359
<v Speaker 1>like the roller coaster that doesn't have any screws, is

0:18:31.359 --> 0:18:33.440
<v Speaker 1>what it feels like the way that you're describing it.

0:18:33.480 --> 0:18:39.280
<v Speaker 1>And to be two people who are experiencing that along

0:18:39.280 --> 0:18:41.840
<v Speaker 1>with already having a child that you're supposed to be

0:18:41.880 --> 0:18:47.720
<v Speaker 1>loving and caring for. I just I want to recognize

0:18:49.080 --> 0:18:53.200
<v Speaker 1>how much strength all of you have to have went

0:18:53.240 --> 0:18:57.160
<v Speaker 1>through that, just the emotional turmoil that you probably went

0:18:57.200 --> 0:19:01.360
<v Speaker 1>through throughout the entire beginning until you the reward of

0:19:01.440 --> 0:19:04.720
<v Speaker 1>having him in your life. It was like you had

0:19:04.760 --> 0:19:07.240
<v Speaker 1>to emotionally go through so much just to get there.

0:19:08.400 --> 0:19:11.520
<v Speaker 2>Yeah. Yeah, looking back at it, I'm like, oh yeah,

0:19:11.560 --> 0:19:14.600
<v Speaker 2>like I can see where, like you do, you need

0:19:14.600 --> 0:19:16.639
<v Speaker 2>a lot of resilience to get through things like that.

0:19:16.680 --> 0:19:18.159
<v Speaker 2>But I think at the time it just felt like

0:19:18.240 --> 0:19:21.000
<v Speaker 2>being beaten to a bloody pulp of I can't handle this,

0:19:21.040 --> 0:19:24.000
<v Speaker 2>I can't handle this, and just thing after thing that

0:19:24.160 --> 0:19:26.960
<v Speaker 2>was so beyond my capacity, because it really was. But

0:19:27.040 --> 0:19:30.040
<v Speaker 2>then hindsight's twenty twenty, and I can be like, okay,

0:19:30.080 --> 0:19:33.800
<v Speaker 2>that that was so incredibly painful, But I also can

0:19:33.880 --> 0:19:37.159
<v Speaker 2>recognize qualities that I have now that I wouldn't have

0:19:37.200 --> 0:19:39.240
<v Speaker 2>been able to get any other way. And so I

0:19:39.280 --> 0:19:41.840
<v Speaker 2>think in that way it helps me. That's actually helped

0:19:41.880 --> 0:19:43.920
<v Speaker 2>a lot with healing passed a lot of those traumatic

0:19:43.960 --> 0:19:47.520
<v Speaker 2>experiences as recognizing the good that's come from it. As

0:19:47.560 --> 0:19:49.399
<v Speaker 2>cliche as that sounds, and I think that takes a

0:19:49.400 --> 0:19:51.760
<v Speaker 2>lot of distance and stability to be able to see

0:19:51.800 --> 0:19:54.640
<v Speaker 2>that for what it is later, But I think that's

0:19:54.680 --> 0:19:57.560
<v Speaker 2>helped me come to terms with that time because honestly,

0:19:57.640 --> 0:20:00.920
<v Speaker 2>like thinking about that time it gets by heart rate going.

0:20:01.000 --> 0:20:03.119
<v Speaker 2>I'm like, oh, I just I feel for that version

0:20:03.160 --> 0:20:05.600
<v Speaker 2>of myself because it was so scary and so dark,

0:20:06.240 --> 0:20:08.720
<v Speaker 2>And I just remember this one conversation we had, which

0:20:08.760 --> 0:20:12.720
<v Speaker 2>was probably the lowest point that we were emotionally. It

0:20:12.800 --> 0:20:15.760
<v Speaker 2>was I think it was like probably a month before

0:20:15.880 --> 0:20:18.879
<v Speaker 2>he was to be born, and we met with the

0:20:18.920 --> 0:20:22.880
<v Speaker 2>palliative care team, a pediatric palliative care team, and they

0:20:22.920 --> 0:20:25.600
<v Speaker 2>basically were talking about it, talking to us about like

0:20:25.680 --> 0:20:28.760
<v Speaker 2>quality of life and how our lives were about to

0:20:28.840 --> 0:20:32.080
<v Speaker 2>change dramatically, and how we should make sure we had

0:20:32.119 --> 0:20:33.840
<v Speaker 2>a plan so that our daughter could be rushed to

0:20:33.880 --> 0:20:35.800
<v Speaker 2>the hospital things were looking like he wouldn't make it

0:20:35.840 --> 0:20:38.360
<v Speaker 2>so she could meet him, and she's just toddling around

0:20:38.400 --> 0:20:40.440
<v Speaker 2>in the back of this room while we're talking about

0:20:40.480 --> 0:20:43.960
<v Speaker 2>these like horrible, harrowing things. I remember laying in bed

0:20:44.119 --> 0:20:45.920
<v Speaker 2>because I don't think any of the doctors had really

0:20:45.960 --> 0:20:48.800
<v Speaker 2>talked to us about the possibility of him dying, right.

0:20:48.840 --> 0:20:50.320
<v Speaker 2>It was so much of here's how we're going to

0:20:50.359 --> 0:20:52.440
<v Speaker 2>help him survive. Here's what we're gonna do, here's the plan.

0:20:52.840 --> 0:20:55.760
<v Speaker 2>This was the first time we had anyone in the

0:20:55.800 --> 0:20:58.440
<v Speaker 2>medical world sitting us down okay, but let's talk about

0:20:58.440 --> 0:21:00.879
<v Speaker 2>what happens if he doesn't make it. And so I

0:21:00.920 --> 0:21:02.760
<v Speaker 2>remember going home from that and just laying in bed

0:21:02.840 --> 0:21:07.040
<v Speaker 2>with the blinds drawn and just unable to get up.

0:21:07.080 --> 0:21:09.760
<v Speaker 2>I was like, this is so scary, and at the

0:21:09.840 --> 0:21:15.080
<v Speaker 2>time it was interesting. I had a no sorry, let

0:21:15.080 --> 0:21:18.160
<v Speaker 2>me resay that. A few months later, after Kimball was born,

0:21:18.200 --> 0:21:20.760
<v Speaker 2>a friend of mine had a baby that passed away

0:21:20.840 --> 0:21:23.080
<v Speaker 2>right before he was born, because we were pregnant at

0:21:23.080 --> 0:21:25.840
<v Speaker 2>the same time and they were due like three weeks apart.

0:21:26.080 --> 0:21:29.000
<v Speaker 2>And I just remember watching them go through this and

0:21:29.040 --> 0:21:31.800
<v Speaker 2>still now when I see them talk about it, and

0:21:31.880 --> 0:21:33.919
<v Speaker 2>just the way that it completely shattered their lives and

0:21:33.960 --> 0:21:36.800
<v Speaker 2>their hearts, and I sho remember thinking like, I don't

0:21:36.880 --> 0:21:39.240
<v Speaker 2>understand what they're going through, but I feel like I

0:21:39.280 --> 0:21:42.400
<v Speaker 2>can empathize better than most people can who haven't actually

0:21:42.400 --> 0:21:44.800
<v Speaker 2>had this happen to them, because it was like they

0:21:44.840 --> 0:21:47.280
<v Speaker 2>were in this dark alleyway and I had peered around

0:21:47.320 --> 0:21:49.639
<v Speaker 2>the corner and I had like really grappled with what

0:21:49.680 --> 0:21:51.680
<v Speaker 2>it would be like to be in that alleyway. I'd

0:21:51.720 --> 0:21:53.520
<v Speaker 2>really thought, what is this going to be like if

0:21:53.560 --> 0:21:57.159
<v Speaker 2>our son passes away? And so because of that I

0:21:57.200 --> 0:21:59.560
<v Speaker 2>feel like, I don't know, it was like teetering on

0:21:59.600 --> 0:22:02.679
<v Speaker 2>those two worlds, right between those worlds of child loss

0:22:02.720 --> 0:22:05.800
<v Speaker 2>and then having a medically complex child. And I'm grateful

0:22:05.840 --> 0:22:08.400
<v Speaker 2>every day that we ended up not going down the

0:22:08.440 --> 0:22:13.680
<v Speaker 2>proverbial alleyway and instead have a medically complex child. But it, yeah,

0:22:13.760 --> 0:22:14.920
<v Speaker 2>it was a very dark time.

0:22:15.640 --> 0:22:19.960
<v Speaker 1>Yeah. Wow, I'm just I'm like, truly, it is a

0:22:20.000 --> 0:22:23.480
<v Speaker 1>beautiful resilience that you guys have, and I don't know

0:22:23.520 --> 0:22:27.480
<v Speaker 1>that anybody can never understand what that experience was like

0:22:27.600 --> 0:22:29.960
<v Speaker 1>for you guys, either of you guys, your friend or

0:22:29.960 --> 0:22:34.119
<v Speaker 1>for you and it's so individualized that even hearing you

0:22:34.160 --> 0:22:36.600
<v Speaker 1>talk about it, like, there's just no there's no way

0:22:36.640 --> 0:22:40.680
<v Speaker 1>I can truly grasp those emotions that you were experiencing

0:22:40.760 --> 0:22:42.920
<v Speaker 1>in that moment. But I do appreciate you sharing them

0:22:42.920 --> 0:22:45.679
<v Speaker 1>because somebody out there will need to hear it and

0:22:46.680 --> 0:22:51.040
<v Speaker 1>we'll have had similar experiences and need that. And if

0:22:51.119 --> 0:22:53.800
<v Speaker 1>I remember correctly, based on your some of your social

0:22:53.840 --> 0:22:56.760
<v Speaker 1>media content I was watching, he had quite a few

0:22:56.800 --> 0:23:00.120
<v Speaker 1>things that he had to do when he was first born,

0:23:00.240 --> 0:23:03.120
<v Speaker 1>and he did make it, and he had to have

0:23:03.200 --> 0:23:06.920
<v Speaker 1>stuff happening all around him for a lot of that

0:23:07.200 --> 0:23:09.880
<v Speaker 1>time period, and I'm not sure how long, but I'm

0:23:09.920 --> 0:23:12.480
<v Speaker 1>curious what that experience is like, because you get excited

0:23:12.520 --> 0:23:17.520
<v Speaker 1>he's here, he was born, yay, but also what's about

0:23:17.520 --> 0:23:18.120
<v Speaker 1>to happen now?

0:23:19.480 --> 0:23:23.000
<v Speaker 2>Yeah, I mean it was interesting that dynamic, because You're right,

0:23:23.040 --> 0:23:25.240
<v Speaker 2>it was this. When I gave birth to him, it

0:23:25.320 --> 0:23:28.320
<v Speaker 2>was this huge flurry. I was induce so our special

0:23:28.320 --> 0:23:30.600
<v Speaker 2>doctor could be there and this whole team would be ready,

0:23:31.200 --> 0:23:32.400
<v Speaker 2>and then all of a sudden, he just like came

0:23:32.560 --> 0:23:34.440
<v Speaker 2>like way faster than they thought, so she never even

0:23:34.480 --> 0:23:36.640
<v Speaker 2>made it there. I mean, like the room was completely full.

0:23:36.640 --> 0:23:40.119
<v Speaker 2>They were like, everyone get in here now because this

0:23:40.359 --> 0:23:42.800
<v Speaker 2>really like fragile baby's about to be born. And so

0:23:43.000 --> 0:23:45.280
<v Speaker 2>the room was just full of commotion, and they delivered

0:23:45.359 --> 0:23:47.400
<v Speaker 2>him and then whisked him out of this like little

0:23:47.440 --> 0:23:50.040
<v Speaker 2>window they had that connected to the nicicu and then

0:23:50.119 --> 0:23:51.840
<v Speaker 2>it was completely empty, and I was just sitting there

0:23:51.840 --> 0:23:54.640
<v Speaker 2>by myself, and I just remember being like, oh my gosh,

0:23:54.680 --> 0:23:57.320
<v Speaker 2>like I did it and he was born alive. And

0:23:57.359 --> 0:23:59.199
<v Speaker 2>I think at that point too, I was like I

0:23:59.240 --> 0:24:01.960
<v Speaker 2>got this all done. Because childbirth is intense, like in

0:24:01.960 --> 0:24:03.800
<v Speaker 2>and of itself, right, that's like its own whole thing.

0:24:03.960 --> 0:24:05.600
<v Speaker 2>So I was like, yeah, I'm maud of myself.

0:24:06.000 --> 0:24:08.479
<v Speaker 1>You're mentioning that you had a room full of people,

0:24:08.600 --> 0:24:11.040
<v Speaker 1>and You're like, I am very vulnerable and I'm about

0:24:11.080 --> 0:24:12.720
<v Speaker 1>to have this huge moment in my life and then

0:24:13.200 --> 0:24:16.800
<v Speaker 1>it's just everybody's gone. I like the juxposition of that

0:24:16.880 --> 0:24:17.920
<v Speaker 1>experience alone.

0:24:19.119 --> 0:24:21.400
<v Speaker 2>Yeah, it was. Yeah, it was crazy. And I think

0:24:21.440 --> 0:24:25.160
<v Speaker 2>it was interesting because I with my daughter, I had

0:24:25.240 --> 0:24:28.080
<v Speaker 2>the experience of delivering her and then they placed her

0:24:28.119 --> 0:24:30.440
<v Speaker 2>on my chest and then I just have this bonding moment,

0:24:30.920 --> 0:24:32.879
<v Speaker 2>and I knew I wouldn't have that with Kimball, and

0:24:32.920 --> 0:24:35.800
<v Speaker 2>so I think that was actually really helpful to know

0:24:35.920 --> 0:24:37.800
<v Speaker 2>that ahead of time. I've talked to their parents who

0:24:37.840 --> 0:24:40.000
<v Speaker 2>didn't know, like they had no idea anything was wrong

0:24:40.040 --> 0:24:41.359
<v Speaker 2>with their baby, and then they were born and then

0:24:41.400 --> 0:24:44.159
<v Speaker 2>whisked away, and I think that's far more traumatic in

0:24:44.200 --> 0:24:46.920
<v Speaker 2>that way. But I had the knowledge beforehand that there's

0:24:46.920 --> 0:24:48.840
<v Speaker 2>no way he will get whisked off, so they can

0:24:48.880 --> 0:24:52.040
<v Speaker 2>stabilize him. And I remember laying there being like, how

0:24:52.320 --> 0:24:55.600
<v Speaker 2>I'm feeling pretty good. I delivered him. He was alive,

0:24:55.960 --> 0:25:00.200
<v Speaker 2>Like they're stabilizing him. My husband's there with him, and

0:25:00.200 --> 0:25:02.320
<v Speaker 2>and so the moment of not being able to hold him,

0:25:02.359 --> 0:25:06.080
<v Speaker 2>I think felt I don't see what's the right word.

0:25:06.280 --> 0:25:09.800
<v Speaker 2>It didn't feel funny, but it felt almost Wow, this

0:25:09.840 --> 0:25:11.840
<v Speaker 2>is a really weird experience. They took the baby out.

0:25:11.920 --> 0:25:13.840
<v Speaker 2>He's gone, and then my husband came in and showed

0:25:13.880 --> 0:25:15.359
<v Speaker 2>me a picture of him. That's how I saw him

0:25:15.400 --> 0:25:17.840
<v Speaker 2>for the first time, because they held him up really

0:25:17.840 --> 0:25:19.399
<v Speaker 2>briefly and then whisked him away, so I didn't really

0:25:19.440 --> 0:25:21.879
<v Speaker 2>see him at first. So he showed me this picture

0:25:21.880 --> 0:25:25.520
<v Speaker 2>of this adorable fat baby. Completely he was sedated, like

0:25:25.560 --> 0:25:28.879
<v Speaker 2>they had to give him extra doses of sedation to

0:25:28.960 --> 0:25:31.159
<v Speaker 2>be able to intubate him, and so they were shoving

0:25:31.200 --> 0:25:34.120
<v Speaker 2>the breathing tubes down into his lungs and I guess

0:25:34.160 --> 0:25:36.560
<v Speaker 2>he had been pulling them out and so they had

0:25:36.560 --> 0:25:39.040
<v Speaker 2>to sedate him. And so I saw this like adorable

0:25:39.160 --> 0:25:41.480
<v Speaker 2>splade baby, and I was like, oh, my gosh, there

0:25:41.480 --> 0:25:43.800
<v Speaker 2>he is. There's Kimball. And so I think it was

0:25:43.960 --> 0:25:47.240
<v Speaker 2>just it was a very humanizing moment to be like,

0:25:47.480 --> 0:25:50.040
<v Speaker 2>he's a real human baby and he is mine and

0:25:50.080 --> 0:25:53.120
<v Speaker 2>I'm his mom. And I felt so proud of us,

0:25:53.200 --> 0:25:56.879
<v Speaker 2>like forgetting this far. And they wheeled me back to

0:25:56.920 --> 0:25:58.640
<v Speaker 2>see him, and so I was like, because I had

0:25:58.680 --> 0:26:00.480
<v Speaker 2>just had him, and so I was in a wheelchair

0:26:01.160 --> 0:26:02.920
<v Speaker 2>and it brought me back to the nicky to see him,

0:26:02.920 --> 0:26:04.679
<v Speaker 2>and there was this beautiful baby and I was like,

0:26:04.880 --> 0:26:07.000
<v Speaker 2>he's mine. I don't know. It was interesting how it's

0:26:07.040 --> 0:26:11.760
<v Speaker 2>like there's this almost detachment because he wasn't just laid

0:26:11.760 --> 0:26:13.800
<v Speaker 2>on my chest. It wasn't like on now, I'm never

0:26:13.880 --> 0:26:16.040
<v Speaker 2>parted with him like it was with my daughter, because

0:26:16.080 --> 0:26:18.359
<v Speaker 2>he was like being taken care of by other people.

0:26:19.040 --> 0:26:21.680
<v Speaker 2>It almost felt like this little every morning when we

0:26:21.680 --> 0:26:23.840
<v Speaker 2>would go once I was discharged and we'd come visit

0:26:23.920 --> 0:26:26.639
<v Speaker 2>him in the nicke, you it felt like Christmas morning.

0:26:26.720 --> 0:26:28.320
<v Speaker 2>Like every morning it was like, oh, there he is,

0:26:28.359 --> 0:26:30.560
<v Speaker 2>there's my son. And it was just such an interesting

0:26:31.280 --> 0:26:34.840
<v Speaker 2>experience and it was very painful to leave him there,

0:26:35.240 --> 0:26:37.720
<v Speaker 2>but at the same time, it was a very unique

0:26:38.359 --> 0:26:40.399
<v Speaker 2>feeling of joy to go there and to feel so

0:26:40.480 --> 0:26:44.119
<v Speaker 2>proud of this baby that was mine and so you

0:26:44.240 --> 0:26:44.720
<v Speaker 2>brought him.

0:26:44.640 --> 0:26:46.679
<v Speaker 1>Into the world, so I could see how that like,

0:26:47.080 --> 0:26:49.840
<v Speaker 1>he is mine, but also I don't have him yet,

0:26:50.000 --> 0:26:51.879
<v Speaker 1>and you're used to the experience that you had with

0:26:51.920 --> 0:26:54.560
<v Speaker 1>your daughter, so vastly different.

0:26:55.119 --> 0:26:58.120
<v Speaker 2>Yeah, It was messy, for sure. It was so there

0:26:58.119 --> 0:27:02.080
<v Speaker 2>were those intense emotions of joy and like pride over him, Look,

0:27:02.119 --> 0:27:04.520
<v Speaker 2>we did it, he's here, and being so grateful that

0:27:04.600 --> 0:27:08.080
<v Speaker 2>he was there safely, as well as obviously a lot

0:27:08.119 --> 0:27:11.240
<v Speaker 2>of anxiety about will he stay okay, And we weren't

0:27:11.240 --> 0:27:13.199
<v Speaker 2>able to hold him for the first I think it

0:27:13.280 --> 0:27:15.560
<v Speaker 2>was on day like nine we were able to hold

0:27:15.640 --> 0:27:18.120
<v Speaker 2>him because he had this as part of a syndrome.

0:27:18.640 --> 0:27:22.720
<v Speaker 2>His cervical spine was not hardened the bones, the vertebrae

0:27:22.760 --> 0:27:24.600
<v Speaker 2>there and on the C one and C two level,

0:27:24.600 --> 0:27:29.640
<v Speaker 2>so it's a very like catastrophic catastrophic area to not

0:27:29.720 --> 0:27:32.720
<v Speaker 2>be stable to protect his cervical spine, and so if

0:27:32.720 --> 0:27:34.880
<v Speaker 2>he put his chin down to his chest he could

0:27:34.880 --> 0:27:37.840
<v Speaker 2>be paralyzed or die. And so it was like they

0:27:38.200 --> 0:27:40.199
<v Speaker 2>actually kept him sedated the first week too, so we

0:27:40.200 --> 0:27:41.919
<v Speaker 2>didn't see his eyes, we didn't know what color his

0:27:41.960 --> 0:27:45.040
<v Speaker 2>eyes were yet, to keep him from moving around too

0:27:45.119 --> 0:27:47.960
<v Speaker 2>much and injuring himself. So I think just things like

0:27:48.000 --> 0:27:50.600
<v Speaker 2>that was just it was so vastly different than your

0:27:50.640 --> 0:27:54.040
<v Speaker 2>typical baby experience, and so there was a lot of

0:27:54.080 --> 0:27:57.720
<v Speaker 2>anxiety there. There was also like that longing to hold him.

0:27:57.720 --> 0:27:59.080
<v Speaker 2>At first, I was like just so proud of the

0:27:59.080 --> 0:28:01.919
<v Speaker 2>picture we had and being able to see him, But

0:28:01.960 --> 0:28:04.240
<v Speaker 2>then I felt angry. I was like, I want to

0:28:04.240 --> 0:28:06.520
<v Speaker 2>be able to hold my baby. I can't even hold him.

0:28:07.000 --> 0:28:08.640
<v Speaker 2>I can just touch him while he's on this bed

0:28:08.720 --> 0:28:11.200
<v Speaker 2>other people are taking care of him. It was such

0:28:11.200 --> 0:28:13.720
<v Speaker 2>a detached parenting experience, and I knew what it was

0:28:13.760 --> 0:28:15.359
<v Speaker 2>supposed to be. Like, I was like, I'm not a

0:28:15.359 --> 0:28:17.720
<v Speaker 2>first time mom, Like I'm watching these strangers like change

0:28:17.760 --> 0:28:21.040
<v Speaker 2>his diaper. And they allowed us to do what they

0:28:21.040 --> 0:28:24.440
<v Speaker 2>called his cares, which is changing diapers and like switching

0:28:24.480 --> 0:28:27.679
<v Speaker 2>around his little like pull socks on his foot and

0:28:27.720 --> 0:28:29.800
<v Speaker 2>things like that. And they were like, oh, you can

0:28:29.880 --> 0:28:31.679
<v Speaker 2>do some of the cares if you want to, like

0:28:31.720 --> 0:28:34.080
<v Speaker 2>help you like bond with your baby and stuff. And

0:28:34.160 --> 0:28:36.879
<v Speaker 2>so I remember changing his diaper and it was a

0:28:36.880 --> 0:28:39.880
<v Speaker 2>wet diaper and I was like, should I like wipe

0:28:39.960 --> 0:28:41.719
<v Speaker 2>him if it's just pete? And I was like, what

0:28:41.840 --> 0:28:43.720
<v Speaker 2>is happening right now? Why am I asking a nurse

0:28:43.800 --> 0:28:46.640
<v Speaker 2>if I should wipe my baby's bum? I am a mom,

0:28:46.680 --> 0:28:48.440
<v Speaker 2>Like I already know all this stuff. It just felt

0:28:48.480 --> 0:28:50.480
<v Speaker 2>so weird to feel like I had to ask permission

0:28:50.520 --> 0:28:54.280
<v Speaker 2>for everything when I already was I already was an

0:28:54.400 --> 0:28:57.680
<v Speaker 2>established mom at this point.

0:28:58.320 --> 0:29:00.840
<v Speaker 1>That experience just being in there, and you feel a

0:29:00.840 --> 0:29:04.520
<v Speaker 1>little helpless too, I would think, because you are asking someone,

0:29:04.560 --> 0:29:06.280
<v Speaker 1>but also you can't do all the things that you

0:29:06.360 --> 0:29:08.880
<v Speaker 1>know you're capable of doing, but it's like you're not

0:29:08.920 --> 0:29:12.960
<v Speaker 1>allowed to until given that space. So how long was

0:29:12.960 --> 0:29:15.720
<v Speaker 1>he in the nick U four He was.

0:29:15.640 --> 0:29:18.120
<v Speaker 2>There for twenty two days, which felt so long to

0:29:18.160 --> 0:29:20.960
<v Speaker 2>me at the time, But we also watched another little

0:29:21.000 --> 0:29:24.080
<v Speaker 2>resident there have her first birthday there and she had

0:29:24.080 --> 0:29:26.680
<v Speaker 2>not gone home yet, So I think I also felt

0:29:26.720 --> 0:29:31.280
<v Speaker 2>the gravity of I'm so grateful that he didn't have

0:29:31.280 --> 0:29:33.320
<v Speaker 2>to stay here very long, and I'm so grateful he's

0:29:33.360 --> 0:29:35.520
<v Speaker 2>coming home because we didn't know if we would take

0:29:35.560 --> 0:29:38.160
<v Speaker 2>him home, and there was a moment where he had

0:29:38.200 --> 0:29:40.160
<v Speaker 2>just come out of surgery and things were looking dicey,

0:29:40.960 --> 0:29:43.320
<v Speaker 2>and so being able to bring him home was again

0:29:43.360 --> 0:29:46.280
<v Speaker 2>it was like bringing home this little like this ultimate

0:29:46.360 --> 0:29:49.200
<v Speaker 2>Christmas present of our baby's coming home now, which again

0:29:49.240 --> 0:29:51.280
<v Speaker 2>it was Yeah, it's just so surreal the way it happened.

0:29:52.520 --> 0:29:55.880
<v Speaker 1>Yeah. So then the years that follow and he's now seven.

0:29:56.920 --> 0:30:02.240
<v Speaker 1>In those years, like what has been the medical responsibility

0:30:02.360 --> 0:30:05.280
<v Speaker 1>for you guys. Been like, as he does grow up

0:30:05.320 --> 0:30:09.320
<v Speaker 1>and he becomes his own little human and gets into

0:30:09.440 --> 0:30:11.240
<v Speaker 1>all the fun years and you guys get to do

0:30:11.280 --> 0:30:15.040
<v Speaker 1>stuff with him. What is that other side, though, the

0:30:15.080 --> 0:30:19.520
<v Speaker 1>care that goes into making sure he's allowed to have

0:30:19.560 --> 0:30:20.560
<v Speaker 1>those experiences.

0:30:21.960 --> 0:30:25.800
<v Speaker 2>So in the first few years, the biggest the biggest

0:30:25.880 --> 0:30:28.320
<v Speaker 2>hurdle was his neck, right making sure he didn't because

0:30:28.320 --> 0:30:31.480
<v Speaker 2>babies and kids, like, they fall over, they roll over

0:30:31.560 --> 0:30:33.840
<v Speaker 2>like they're doing a lot, and having this thing hanging

0:30:33.920 --> 0:30:35.760
<v Speaker 2>over us of oh, but he can't fall or he'll

0:30:35.800 --> 0:30:38.360
<v Speaker 2>break his neck and maybe die or be paralyzed was

0:30:38.480 --> 0:30:41.520
<v Speaker 2>just this really heavy, ominous thing. So we have these

0:30:41.520 --> 0:30:43.720
<v Speaker 2>big cervical spine collars, like kind of like the ones

0:30:43.760 --> 0:30:46.160
<v Speaker 2>you see when people break their neck. He had that

0:30:46.240 --> 0:30:48.600
<v Speaker 2>on from day seven or whatever day it was that

0:30:48.640 --> 0:30:51.080
<v Speaker 2>they made it for him, and so that was a

0:30:51.080 --> 0:30:53.760
<v Speaker 2>big part of his care. We also had a rollercoaster

0:30:53.840 --> 0:30:56.000
<v Speaker 2>with that where there was one appointment they were like, oh,

0:30:56.360 --> 0:30:58.560
<v Speaker 2>actually it's all hardened. It's great, You're good to go.

0:30:58.600 --> 0:31:00.640
<v Speaker 2>You don't need this anymore. You don't need this big

0:31:00.640 --> 0:31:02.640
<v Speaker 2>invasive surgery to fix it like we thought you would.

0:31:03.240 --> 0:31:05.640
<v Speaker 2>And we were like on cloud nine bringing him home

0:31:05.680 --> 0:31:08.560
<v Speaker 2>without this and finally being able to hold him without

0:31:08.640 --> 0:31:11.200
<v Speaker 2>this brace. And then three months later at the follow up,

0:31:11.200 --> 0:31:13.560
<v Speaker 2>they were like, no way, Like the other doctor was

0:31:13.600 --> 0:31:16.080
<v Speaker 2>completely wrong. This is so dangerous. And to realize that

0:31:16.160 --> 0:31:18.760
<v Speaker 2>whole time, he could have died anytime during that point

0:31:19.280 --> 0:31:21.640
<v Speaker 2>or any point during that time. Yeah, so that was

0:31:21.680 --> 0:31:24.120
<v Speaker 2>really scary. And so again that roller coaster of going

0:31:24.200 --> 0:31:27.360
<v Speaker 2>up and down, and then later it did harden and

0:31:27.440 --> 0:31:29.400
<v Speaker 2>so he never ended up needing this huge surgery and

0:31:29.400 --> 0:31:30.920
<v Speaker 2>he didn't need the color anymore. So that was a

0:31:31.040 --> 0:31:33.520
<v Speaker 2>huge relief. And that was like, like, over the years

0:31:34.120 --> 0:31:36.720
<v Speaker 2>medically he's stabilized to where he is now, and so

0:31:37.040 --> 0:31:39.920
<v Speaker 2>just one thing at a time was dropped off the

0:31:39.920 --> 0:31:42.920
<v Speaker 2>plate of medical care. So that was one huge one.

0:31:43.440 --> 0:31:45.920
<v Speaker 2>He also had a feeding tube for the first few years,

0:31:45.960 --> 0:31:49.040
<v Speaker 2>and so once he weaned off of that, that was incredible.

0:31:49.680 --> 0:31:52.160
<v Speaker 2>Although it was so cute because his perspective of his

0:31:52.240 --> 0:31:55.800
<v Speaker 2>disabilities is very different than ours, Like he's always been

0:31:56.000 --> 0:31:59.520
<v Speaker 2>so proud and which I love, but like when we

0:31:59.560 --> 0:32:02.360
<v Speaker 2>removed his he had a g twobe button and so

0:32:02.400 --> 0:32:04.760
<v Speaker 2>that just goes right into his stomach and so you

0:32:04.840 --> 0:32:06.360
<v Speaker 2>were able to feed him that way. And so the

0:32:06.440 --> 0:32:09.000
<v Speaker 2>day we removed that little button that went into his stomach,

0:32:09.600 --> 0:32:12.400
<v Speaker 2>he was so upset. We had ice cream ready, we

0:32:12.400 --> 0:32:15.400
<v Speaker 2>were gonna have this big party, and he just laid

0:32:15.440 --> 0:32:18.440
<v Speaker 2>on the floor with his special blanket like crying. I

0:32:18.520 --> 0:32:20.480
<v Speaker 2>was like, oh, my gosh, he's really sad. And he

0:32:20.600 --> 0:32:23.160
<v Speaker 2>used to play with his little button when he was

0:32:23.240 --> 0:32:26.120
<v Speaker 2>nervous or like sad. So I realized, like, we just

0:32:26.240 --> 0:32:28.800
<v Speaker 2>removed a body part of his basically to him, like

0:32:28.840 --> 0:32:31.800
<v Speaker 2>he never remembers not having it. It's been very interesting

0:32:31.840 --> 0:32:34.760
<v Speaker 2>to see the difference in how he feels about that

0:32:34.800 --> 0:32:37.800
<v Speaker 2>type of thing to compared to how we feel because

0:32:37.800 --> 0:32:39.240
<v Speaker 2>we're like, oh, you shouldn't have needed that in the

0:32:39.240 --> 0:32:41.440
<v Speaker 2>first place. I'm so sorry this happened to you. And

0:32:41.480 --> 0:32:42.760
<v Speaker 2>for him, where'd my button go?

0:32:42.960 --> 0:32:43.040
<v Speaker 1>Like?

0:32:43.080 --> 0:32:46.040
<v Speaker 2>I really liked playing with that. Yeah, So that's been

0:32:46.080 --> 0:32:46.960
<v Speaker 2>really interesting.

0:32:47.600 --> 0:32:50.600
<v Speaker 1>The kid's perspective is so cool. They don't see it

0:32:50.720 --> 0:32:54.280
<v Speaker 1>as anything other than just them. This is who I am,

0:32:54.440 --> 0:32:57.920
<v Speaker 1>this is how I was born. And it's cool to

0:32:58.000 --> 0:33:00.920
<v Speaker 1>hear that was the experience because I I bet that

0:33:01.000 --> 0:33:04.360
<v Speaker 1>allowed you guys to have even more perspective of him,

0:33:04.600 --> 0:33:07.240
<v Speaker 1>thinking he probably felt all the things that you guys

0:33:07.240 --> 0:33:09.320
<v Speaker 1>were feeling, and he was born and all of this

0:33:10.320 --> 0:33:13.000
<v Speaker 1>emotional experience that you guys went through of this is

0:33:13.040 --> 0:33:15.280
<v Speaker 1>what his life is going to be like and he

0:33:15.400 --> 0:33:17.160
<v Speaker 1>was just born. I was like, this is just me.

0:33:18.280 --> 0:33:21.840
<v Speaker 2>Yeah, yeah, for sure. He also is. Part of his

0:33:21.880 --> 0:33:24.840
<v Speaker 2>diagnosis is deaf blind, which means he just has that

0:33:24.960 --> 0:33:28.320
<v Speaker 2>dual loss of visual impairment and hearing loss. So in

0:33:28.360 --> 0:33:31.200
<v Speaker 2>the first little bit when he was a baby, he

0:33:31.320 --> 0:33:34.320
<v Speaker 2>was profoundly deaf and profoundly blind, and so I just

0:33:34.360 --> 0:33:36.520
<v Speaker 2>remember that same type of thing of projecting how I

0:33:36.520 --> 0:33:38.240
<v Speaker 2>would feel. I love being like, what would it be

0:33:38.360 --> 0:33:41.680
<v Speaker 2>like to only have light perception at like bright windows

0:33:42.280 --> 0:33:45.080
<v Speaker 2>and to have these squeaky little hearing aids that are

0:33:45.200 --> 0:33:47.600
<v Speaker 2>like sound completely different and he really can't hear that

0:33:47.640 --> 0:33:50.640
<v Speaker 2>well with these either, Like that was something that I

0:33:50.680 --> 0:33:54.760
<v Speaker 2>felt so distraught about. But he has now his vision

0:33:54.800 --> 0:33:57.520
<v Speaker 2>has improved from what it used to be, and so

0:33:57.560 --> 0:34:00.280
<v Speaker 2>he's pretty functional with it. But even like he can't

0:34:01.040 --> 0:34:04.320
<v Speaker 2>he will often not see things that are clearly there,

0:34:04.360 --> 0:34:07.360
<v Speaker 2>and he's just happy to be here. And it's just

0:34:07.440 --> 0:34:09.680
<v Speaker 2>it's very interesting to see how it doesn't phaze him

0:34:09.680 --> 0:34:12.319
<v Speaker 2>because he doesn't know any different. I think sometimes his

0:34:12.400 --> 0:34:14.239
<v Speaker 2>parents that's a really sad thought of, Oh, he doesn't

0:34:14.280 --> 0:34:16.520
<v Speaker 2>know any different, But he doesn't know any different, and

0:34:16.560 --> 0:34:19.200
<v Speaker 2>so I think really coming to terms with that has

0:34:19.280 --> 0:34:24.239
<v Speaker 2>really helped too, and how I view his disabilities. So

0:34:24.360 --> 0:34:27.799
<v Speaker 2>he's fine with this. And he does have dwarfism, so

0:34:27.880 --> 0:34:30.279
<v Speaker 2>he's very tiny. He looks like a three year old

0:34:30.360 --> 0:34:33.799
<v Speaker 2>even though he's almost seven, and sometimes he'll be like, oh,

0:34:34.000 --> 0:34:35.920
<v Speaker 2>I want to be tall. But other than that, he

0:34:36.000 --> 0:34:39.000
<v Speaker 2>just struts right into school. I'm super confident and proud

0:34:39.000 --> 0:34:41.440
<v Speaker 2>of himself and all the parts of him. And so

0:34:42.239 --> 0:34:45.040
<v Speaker 2>that's been something I wish I could have shown myself

0:34:45.480 --> 0:34:47.719
<v Speaker 2>in those first few weeks after finding out that he

0:34:47.719 --> 0:34:50.120
<v Speaker 2>would be disabled, to be like, but look like, look

0:34:50.120 --> 0:34:55.640
<v Speaker 2>at this adorable child that's alive and medically stable and

0:34:56.320 --> 0:34:59.160
<v Speaker 2>embraces himself with all of his disabilities. And the I

0:34:59.160 --> 0:35:00.680
<v Speaker 2>think one of the hard parts of this is that's

0:35:00.760 --> 0:35:03.040
<v Speaker 2>not the case for a lot of parents, right that

0:35:03.280 --> 0:35:06.799
<v Speaker 2>it doesn't often happen where they stabilize medically and then

0:35:06.840 --> 0:35:09.719
<v Speaker 2>everything's like you're just assisting them with their disabilities, but

0:35:09.760 --> 0:35:12.480
<v Speaker 2>everything's okay. I think for a lot of parents and

0:35:12.560 --> 0:35:16.680
<v Speaker 2>especially the ones I talk to their child's diseases progress

0:35:17.080 --> 0:35:19.920
<v Speaker 2>until they pass away before adulthood. And that is the

0:35:20.000 --> 0:35:23.160
<v Speaker 2>really heavy hard side of this is that my story

0:35:23.239 --> 0:35:25.279
<v Speaker 2>is not the story for many parents, and I'm very

0:35:25.280 --> 0:35:27.719
<v Speaker 2>aware of that. And so you asked at the beginning

0:35:28.320 --> 0:35:31.120
<v Speaker 2>why I started the podcast that I did, and it

0:35:31.160 --> 0:35:33.520
<v Speaker 2>really goes it's those are the parents that I really

0:35:33.560 --> 0:35:35.799
<v Speaker 2>aim to serve, or the parents who, first of all,

0:35:35.880 --> 0:35:38.160
<v Speaker 2>the ones that are experiencing things the way I did

0:35:39.040 --> 0:35:42.120
<v Speaker 2>in those dark early days, as well as the parents

0:35:42.160 --> 0:35:44.279
<v Speaker 2>who stay in those dark days, right, the ones who

0:35:44.320 --> 0:35:46.719
<v Speaker 2>don't have the happy ending with the flowers and the

0:35:46.760 --> 0:35:49.080
<v Speaker 2>confident child and all those things, The parents who will

0:35:49.120 --> 0:35:51.640
<v Speaker 2>lose that child, the one that they've grown to love

0:35:51.719 --> 0:35:55.200
<v Speaker 2>so much, and it's just such an isolating experience. And

0:35:56.000 --> 0:35:58.800
<v Speaker 2>I think community is something that can be so empowering

0:35:58.800 --> 0:36:02.560
<v Speaker 2>and so healing. So that drives everything that we do

0:36:02.800 --> 0:36:05.560
<v Speaker 2>to try to help create that community. And there's already

0:36:05.600 --> 0:36:07.400
<v Speaker 2>there are so many parents doing similar things. I'm not

0:36:07.400 --> 0:36:09.959
<v Speaker 2>the only one creating that community, but I think every

0:36:09.960 --> 0:36:13.360
<v Speaker 2>effort there is so important.

0:36:12.760 --> 0:36:16.120
<v Speaker 1>And to your point, because there are rare conditions, these

0:36:16.120 --> 0:36:19.480
<v Speaker 1>are things that are isolating and feel very lonely. So

0:36:19.920 --> 0:36:24.720
<v Speaker 1>anything anybody can do to help, just provide a space

0:36:24.719 --> 0:36:28.239
<v Speaker 1>where people can feel seen and connected to is the

0:36:28.280 --> 0:36:31.600
<v Speaker 1>best thing. That was the purpose of my podcast was

0:36:31.640 --> 0:36:35.760
<v Speaker 1>doing that, just in a broader sense, not as niche.

0:36:35.800 --> 0:36:38.120
<v Speaker 1>So I love what you're doing. I think it's incredible.

0:36:38.160 --> 0:36:39.759
<v Speaker 1>It's how I found you when I was trying to

0:36:39.760 --> 0:36:42.680
<v Speaker 1>find someone to share their story and be willing to

0:36:42.800 --> 0:36:45.359
<v Speaker 1>because it's also hard to share a story like this

0:36:45.600 --> 0:36:48.920
<v Speaker 1>and have so many experiences that you've had and be like, yeah,

0:36:49.000 --> 0:36:50.960
<v Speaker 1>let me keep reliving them or let me keep talking

0:36:50.960 --> 0:36:53.520
<v Speaker 1>about them. That's not an easy thing to do. So

0:36:53.680 --> 0:36:56.040
<v Speaker 1>I love what you're doing and I think it's awesome.

0:36:56.800 --> 0:37:01.520
<v Speaker 1>And you do mention your daughter. You have two kids.

0:37:01.719 --> 0:37:06.000
<v Speaker 1>What is it like the experience for you now parenting

0:37:06.160 --> 0:37:08.000
<v Speaker 1>kids that have differences.

0:37:09.120 --> 0:37:13.560
<v Speaker 2>At the beginning, it was so hard and scary because

0:37:13.600 --> 0:37:16.960
<v Speaker 2>our daughter Wendy was really struggling while I was struggling.

0:37:17.000 --> 0:37:18.640
<v Speaker 2>I think it had more to do with me struggling

0:37:18.680 --> 0:37:20.759
<v Speaker 2>than it did her brother struggling. At the time, I

0:37:20.760 --> 0:37:23.640
<v Speaker 2>think that instability has a stay at home mom before

0:37:23.680 --> 0:37:25.880
<v Speaker 2>that and everything, so like we were together all the time,

0:37:26.000 --> 0:37:28.560
<v Speaker 2>and so I think that me having a hard time

0:37:28.640 --> 0:37:33.360
<v Speaker 2>emotionally therefore translated over to her, and I felt like

0:37:33.840 --> 0:37:36.640
<v Speaker 2>I was drowning and she was drowning too next to me.

0:37:36.680 --> 0:37:38.320
<v Speaker 2>But there was nothing I could do because I was

0:37:38.360 --> 0:37:41.480
<v Speaker 2>also drowning, and so that was incredibly painful. But as

0:37:41.560 --> 0:37:45.040
<v Speaker 2>Kimball has stabilized over the years and I've also stabilized,

0:37:45.200 --> 0:37:48.160
<v Speaker 2>it's become just part of our family, just the way

0:37:48.160 --> 0:37:51.399
<v Speaker 2>our family is. We talk about Kimball's we make jokes

0:37:51.400 --> 0:37:53.480
<v Speaker 2>about his hearing aims, or oh, he totally misheard me,

0:37:53.680 --> 0:37:57.359
<v Speaker 2>or sometimes he'll walk into a room that I'm sitting in,

0:37:57.719 --> 0:37:59.919
<v Speaker 2>like mom, and scan the room and then walk out

0:38:00.040 --> 0:38:01.600
<v Speaker 2>and look in all the other rooms and then I'll

0:38:01.640 --> 0:38:03.160
<v Speaker 2>bet kim Mo'm in here, and then he walks and

0:38:03.160 --> 0:38:07.160
<v Speaker 2>he's like, that was magic. Yep, Kimball, that was magic.

0:38:07.320 --> 0:38:10.560
<v Speaker 2>That's incredible, you disappeared here. So just little things like

0:38:10.600 --> 0:38:13.560
<v Speaker 2>the Wendy and her dad and I can have little

0:38:13.640 --> 0:38:16.720
<v Speaker 2>jokes about because funny little things like that happen related

0:38:16.719 --> 0:38:20.040
<v Speaker 2>to his disabilities. And I think we're also going to

0:38:20.120 --> 0:38:22.239
<v Speaker 2>test her for autism, because that's one thing that we've

0:38:22.280 --> 0:38:24.839
<v Speaker 2>been curious about, especially with the way that she really

0:38:24.880 --> 0:38:27.839
<v Speaker 2>struggled in the beginning with that change. And so when

0:38:27.880 --> 0:38:30.319
<v Speaker 2>I first talked about this with her, Hey, Wendy, I

0:38:30.320 --> 0:38:32.480
<v Speaker 2>think you might be autistic. And this is something too

0:38:32.520 --> 0:38:34.840
<v Speaker 2>that I've become so much more open to and neutral

0:38:34.880 --> 0:38:39.760
<v Speaker 2>about because of being exposed to disabled individuals and autistic adults,

0:38:39.760 --> 0:38:42.160
<v Speaker 2>and so for me, there wasn't that stigma that I

0:38:42.200 --> 0:38:44.239
<v Speaker 2>think there is for some people. And so I was like,

0:38:44.320 --> 0:38:46.000
<v Speaker 2>you know, like, Wendy, I think you might be autistic.

0:38:46.040 --> 0:38:47.960
<v Speaker 2>And I was like, it's a different type of disability,

0:38:47.960 --> 0:38:49.319
<v Speaker 2>and she was like, oh my gosh, I might be

0:38:49.320 --> 0:38:52.719
<v Speaker 2>disabled like Kimble, and she was just thrilled. So I

0:38:52.760 --> 0:38:55.600
<v Speaker 2>think that's something that I have felt has been such

0:38:55.640 --> 0:38:58.920
<v Speaker 2>a strength to her, is being able to have that

0:38:59.000 --> 0:39:02.439
<v Speaker 2>perspective and right from the get go that I didn't

0:39:02.480 --> 0:39:04.360
<v Speaker 2>have as an adult when I was pregnant with Kimball.

0:39:04.400 --> 0:39:06.959
<v Speaker 2>That was like the world was ending to me, even

0:39:07.000 --> 0:39:09.239
<v Speaker 2>just the disability side of it. And for her, she

0:39:09.440 --> 0:39:11.719
<v Speaker 2>was just thrilled to think that she might be in

0:39:11.800 --> 0:39:14.200
<v Speaker 2>this club of being a disabled person, and I think

0:39:14.320 --> 0:39:17.040
<v Speaker 2>that has made me very proud of her. And then

0:39:17.080 --> 0:39:20.400
<v Speaker 2>there's also this experience that we had recently where so

0:39:20.520 --> 0:39:23.400
<v Speaker 2>I'm a carrier for our son's condition. So I passed

0:39:23.400 --> 0:39:26.480
<v Speaker 2>it to him, passed it to him unknowingly, I have

0:39:26.480 --> 0:39:28.880
<v Speaker 2>a fifty to fifty chance of passing it on to children.

0:39:29.480 --> 0:39:31.600
<v Speaker 2>Boys are the only ones who manifested. This is all

0:39:31.600 --> 0:39:34.000
<v Speaker 2>the genetics stuff that I forgot from high school and

0:39:34.080 --> 0:39:38.000
<v Speaker 2>I had to relearn as it really impacted my real life.

0:39:38.040 --> 0:39:40.600
<v Speaker 2>But so our daughter Wendy had a fifty chance of

0:39:40.600 --> 0:39:43.040
<v Speaker 2>being a carrier for this as well and having the

0:39:43.120 --> 0:39:46.640
<v Speaker 2>same from what I a similar experiences I've had having children,

0:39:47.480 --> 0:39:49.840
<v Speaker 2>and so that was this really intense thing. And she

0:39:49.920 --> 0:39:52.680
<v Speaker 2>decided she wanted to be tested when she's nine years

0:39:52.680 --> 0:39:55.319
<v Speaker 2>old right now, so that look down upon. We had

0:39:55.320 --> 0:39:58.839
<v Speaker 2>to push back against the geneticis being like, that's too young.

0:39:58.880 --> 0:40:00.759
<v Speaker 2>She should wait till she's about to find about to

0:40:00.760 --> 0:40:03.799
<v Speaker 2>have children if she chooses to. But she wanted to know.

0:40:03.880 --> 0:40:05.080
<v Speaker 2>She was like, I want to know if I'm a

0:40:05.120 --> 0:40:07.759
<v Speaker 2>carrier or not. And so we walked this path with her.

0:40:08.400 --> 0:40:10.760
<v Speaker 2>This is just so recent, which the last couple of months,

0:40:10.800 --> 0:40:13.600
<v Speaker 2>and it was very emotional, is a very heavy thing

0:40:13.640 --> 0:40:16.319
<v Speaker 2>to watch her going through, but she handled it with

0:40:16.480 --> 0:40:19.640
<v Speaker 2>so much self compassion and self awareness, and I was

0:40:19.800 --> 0:40:22.440
<v Speaker 2>so proud of her, and so we later found out

0:40:22.640 --> 0:40:25.120
<v Speaker 2>she came back negative for it, which was a huge celebration,

0:40:25.719 --> 0:40:28.239
<v Speaker 2>But throughout the whole process, I was like, she's had

0:40:28.280 --> 0:40:31.279
<v Speaker 2>to grow up faster than her peers in this type

0:40:31.320 --> 0:40:34.960
<v Speaker 2>of this heaviness that she's had in her life, and

0:40:35.200 --> 0:40:37.920
<v Speaker 2>to be able to see the benefits that has also

0:40:38.040 --> 0:40:39.600
<v Speaker 2>caused her. Like I was talking about the beginning of

0:40:39.680 --> 0:40:42.160
<v Speaker 2>seeing the hard things that we've been through and to

0:40:42.160 --> 0:40:43.680
<v Speaker 2>be like, oh, I can see the benefits that's had

0:40:43.719 --> 0:40:46.440
<v Speaker 2>in my life in different qualities I have now And

0:40:46.480 --> 0:40:49.160
<v Speaker 2>so it's been really cool to see a version of

0:40:49.200 --> 0:40:51.759
<v Speaker 2>that in our daughter because these children, the siblings, are

0:40:51.800 --> 0:40:54.480
<v Speaker 2>going along the ride. They're not the parents and they're

0:40:54.520 --> 0:40:56.400
<v Speaker 2>not the disabled person, but they're going along in their

0:40:56.440 --> 0:41:00.839
<v Speaker 2>own unique perspective with the same just that we are.

0:41:00.880 --> 0:41:03.240
<v Speaker 2>And so that has made me feel very proud of her.

0:41:04.080 --> 0:41:07.480
<v Speaker 1>Wow, it, Madeline, it sounds like your kids are just

0:41:07.600 --> 0:41:10.879
<v Speaker 1>being raised with so much love. That's what comes through

0:41:10.960 --> 0:41:13.080
<v Speaker 1>in your stories and what you're talking about. And I

0:41:13.160 --> 0:41:16.560
<v Speaker 1>know sometimes it's hard as a parent, like bigger picture

0:41:16.680 --> 0:41:18.480
<v Speaker 1>to you see them and you're proud of them, but

0:41:19.200 --> 0:41:22.680
<v Speaker 1>to also know your role in your husband's role, and

0:41:23.000 --> 0:41:26.319
<v Speaker 1>because that doesn't just happen like we are how we

0:41:26.320 --> 0:41:30.480
<v Speaker 1>were raised and what's around us, and your daughter and

0:41:30.560 --> 0:41:33.239
<v Speaker 1>your son just sound so full of life and so

0:41:33.560 --> 0:41:35.879
<v Speaker 1>just ready to take on anything that comes at them,

0:41:35.920 --> 0:41:37.160
<v Speaker 1>and I think it's really awesome.

0:41:38.320 --> 0:41:39.240
<v Speaker 2>Thank you so much.

0:41:39.800 --> 0:41:44.040
<v Speaker 1>Yeah, And before we start to get towards the end

0:41:44.120 --> 0:41:48.320
<v Speaker 1>of this, I want to acknowledge too, like you're a human,

0:41:48.680 --> 0:41:52.920
<v Speaker 1>your husband's a human. You guys were experiencing these things.

0:41:53.440 --> 0:41:56.560
<v Speaker 1>How were you also making sure to show up for

0:41:56.640 --> 0:41:59.160
<v Speaker 1>yourselves and take care of yourselves while all of this

0:41:59.239 --> 0:42:03.719
<v Speaker 1>stuff started happening in your life? And just over the

0:42:03.760 --> 0:42:05.400
<v Speaker 1>course of this entire.

0:42:05.200 --> 0:42:11.480
<v Speaker 2>Experience, I the sense the community aspect has become a

0:42:11.560 --> 0:42:16.040
<v Speaker 2>huge part of processing and healing for me. But during

0:42:16.080 --> 0:42:18.400
<v Speaker 2>the thick of it, I had no idea how to

0:42:18.400 --> 0:42:20.640
<v Speaker 2>find people who understood. So I really was going through

0:42:20.640 --> 0:42:22.480
<v Speaker 2>a lot of this completely alone. As far as people

0:42:22.480 --> 0:42:24.359
<v Speaker 2>who understood what we were going through, we had family

0:42:24.400 --> 0:42:27.439
<v Speaker 2>and friends that were very supportive, But in those first

0:42:27.480 --> 0:42:30.520
<v Speaker 2>few years before I found that community, I just held

0:42:30.520 --> 0:42:33.080
<v Speaker 2>on as tired as I could to a self care

0:42:33.160 --> 0:42:35.640
<v Speaker 2>routine I had before we had Kimball, and that was

0:42:35.800 --> 0:42:39.120
<v Speaker 2>a class called Zoomba. It's a group fitness class, yeah,

0:42:39.880 --> 0:42:43.000
<v Speaker 2>where you danced together with other men and women and

0:42:43.120 --> 0:42:46.040
<v Speaker 2>that's your exercise. And so that was something that I

0:42:46.160 --> 0:42:50.080
<v Speaker 2>religiously kept continued doing while I was pregnant with Kimball

0:42:50.120 --> 0:42:52.160
<v Speaker 2>and while all the stuff was happening, and then after

0:42:52.200 --> 0:42:54.960
<v Speaker 2>he was born, and I remember so my husband was

0:42:55.040 --> 0:42:57.040
<v Speaker 2>very supportive and like I was a stay at home mom,

0:42:57.040 --> 0:42:59.000
<v Speaker 2>so he'd come home and then I'd hand the baton

0:42:59.000 --> 0:43:01.160
<v Speaker 2>off to him and go off to my class. And

0:43:01.200 --> 0:43:02.640
<v Speaker 2>there were a couple of weeks where I had to

0:43:02.680 --> 0:43:05.920
<v Speaker 2>miss and I both times, I like had a complete

0:43:05.960 --> 0:43:08.520
<v Speaker 2>meltdown and we were like, that's funny, that's the week

0:43:08.640 --> 0:43:11.480
<v Speaker 2>I didn't go to Zoomba. So at that point we're

0:43:11.520 --> 0:43:14.759
<v Speaker 2>like non negotiable, like I have to go. And it

0:43:14.800 --> 0:43:16.319
<v Speaker 2>was twice a week, so it wasn't like as an

0:43:16.360 --> 0:43:18.600
<v Speaker 2>everyday thing, but that I think that was just enough

0:43:18.640 --> 0:43:22.040
<v Speaker 2>space for me to feel like myself, because as you

0:43:22.120 --> 0:43:25.720
<v Speaker 2>go through these experiences, you do change in like every

0:43:25.719 --> 0:43:28.319
<v Speaker 2>way possible. It really does feel like your previous self

0:43:28.360 --> 0:43:32.080
<v Speaker 2>is almost unrecognizable. So I think having something that was

0:43:32.160 --> 0:43:35.000
<v Speaker 2>like this aspect that I had before and then the

0:43:35.120 --> 0:43:38.000
<v Speaker 2>during and then the after felt very grounding to me

0:43:38.320 --> 0:43:41.279
<v Speaker 2>and very familiar to me. And not only that, but

0:43:41.480 --> 0:43:45.040
<v Speaker 2>the researched benefits of exercise and actually found out recently

0:43:45.080 --> 0:43:48.360
<v Speaker 2>they said that for stress reduction, dancing is the most

0:43:48.360 --> 0:43:51.440
<v Speaker 2>preferred form of exercise, and I was like, there, you

0:43:51.480 --> 0:43:55.279
<v Speaker 2>got it too. Yeah, So I do think it's something

0:43:55.320 --> 0:43:57.360
<v Speaker 2>that's so light and silly in the midst of stuff

0:43:57.360 --> 0:43:59.600
<v Speaker 2>that was so heavy and dark. And I actually remember

0:44:00.320 --> 0:44:03.840
<v Speaker 2>being in class sometimes when we had an extra aggressive song.

0:44:04.000 --> 0:44:05.480
<v Speaker 2>I don't know how else to describe it, but when

0:44:05.480 --> 0:44:07.399
<v Speaker 2>you're like, ah, you're like pounding your feet or whatever

0:44:07.400 --> 0:44:10.440
<v Speaker 2>it is, and I remember tearing up. I don't think

0:44:10.480 --> 0:44:12.400
<v Speaker 2>I was like falling. I wasn't sobbing, but I was

0:44:12.440 --> 0:44:14.160
<v Speaker 2>like crying as I was doing that because it just

0:44:14.160 --> 0:44:16.719
<v Speaker 2>felt so good to almost like releasing the anger through

0:44:16.719 --> 0:44:19.279
<v Speaker 2>this exercise. Too. Of we found out this news and

0:44:19.360 --> 0:44:21.560
<v Speaker 2>just processing it while I was sitting there like just

0:44:21.640 --> 0:44:25.440
<v Speaker 2>dancing along with my peers and sorry. And then recently

0:44:25.480 --> 0:44:27.520
<v Speaker 2>I went back to that class I had. There was

0:44:27.560 --> 0:44:29.360
<v Speaker 2>a couple of years where we didn't I didn't go

0:44:29.400 --> 0:44:32.960
<v Speaker 2>to that one class specifically with that teacher, and then

0:44:33.040 --> 0:44:35.359
<v Speaker 2>I went back again and I was like, oh, this

0:44:35.400 --> 0:44:38.040
<v Speaker 2>feels like going back to my therapist because it has

0:44:38.080 --> 0:44:40.799
<v Speaker 2>brought back so many of those emotions that I processed

0:44:40.880 --> 0:44:43.440
<v Speaker 2>while being in this zumba class, and anyway, that has

0:44:43.440 --> 0:44:46.279
<v Speaker 2>been something that's been really helpful to me. But if

0:44:46.280 --> 0:44:50.120
<v Speaker 2>anyone's listening and also they want some kind of tool

0:44:50.200 --> 0:44:53.280
<v Speaker 2>to help themselves through things like this, I would recommend

0:44:53.840 --> 0:44:56.200
<v Speaker 2>something like their version of zumba. Right, it doesn't need

0:44:56.200 --> 0:44:59.320
<v Speaker 2>to be Zoomba, but something that maybe they enjoyed or

0:44:59.320 --> 0:45:01.920
<v Speaker 2>helped them find lease or connection or whatever it is

0:45:01.960 --> 0:45:04.840
<v Speaker 2>made them feel good in some way previous to this happening,

0:45:05.320 --> 0:45:06.840
<v Speaker 2>and then to see if there's a version of that

0:45:06.880 --> 0:45:08.840
<v Speaker 2>you can keep doing. If you can't do that exactly

0:45:09.000 --> 0:45:10.799
<v Speaker 2>the exact thing, because I think that was like the

0:45:10.840 --> 0:45:16.879
<v Speaker 2>perfect combination to help me feel okay during all of this.

0:45:17.840 --> 0:45:19.839
<v Speaker 1>I love that you had that outlet, and it being

0:45:19.920 --> 0:45:22.840
<v Speaker 1>zoomba just makes it all the more better because working

0:45:22.880 --> 0:45:25.719
<v Speaker 1>out is so good for you. But something about you

0:45:25.840 --> 0:45:28.920
<v Speaker 1>doing zoomba and just having all these experiences, it just

0:45:29.000 --> 0:45:31.400
<v Speaker 1>makes me smile to think, like, that was your outlet.

0:45:32.080 --> 0:45:34.759
<v Speaker 2>I love that, and no one there had any idea, right,

0:45:34.760 --> 0:45:36.640
<v Speaker 2>They're just like I'm just here zoom, and I'm like, oh,

0:45:36.680 --> 0:45:39.080
<v Speaker 2>I'm processing trauma and all the things.

0:45:38.920 --> 0:45:40.960
<v Speaker 1>Like I gotta stop my foot really hard, and don't

0:45:41.000 --> 0:45:41.719
<v Speaker 1>pity me.

0:45:41.800 --> 0:45:43.880
<v Speaker 2>Okay, let me scream for a second.

0:45:44.680 --> 0:45:47.719
<v Speaker 1>Yes, I'm really glad you had the outlet, and I'm

0:45:47.719 --> 0:45:49.640
<v Speaker 1>glad you were able to take care of yourself, and

0:45:49.680 --> 0:45:51.800
<v Speaker 1>not only that you had a partner who is supportive

0:45:51.800 --> 0:45:54.440
<v Speaker 1>in that, because that is also a battle in itself.

0:45:54.520 --> 0:45:58.880
<v Speaker 1>So just really awesome. I always like to end episodes

0:45:58.880 --> 0:46:00.600
<v Speaker 1>and I think I could talk to you for because

0:46:01.400 --> 0:46:03.880
<v Speaker 1>what you're doing in your podcast is so important, but

0:46:03.920 --> 0:46:07.920
<v Speaker 1>beyond that, your experience in life and just crazy sitting

0:46:07.920 --> 0:46:09.880
<v Speaker 1>here and we're both thirty one years old and just

0:46:09.960 --> 0:46:13.040
<v Speaker 1>vastly different life experiences, which I think is so cool.

0:46:13.320 --> 0:46:15.720
<v Speaker 1>I love that this is a beautiful life that you've had,

0:46:15.760 --> 0:46:18.680
<v Speaker 1>and I just I love that, Like I'm sitting here

0:46:18.680 --> 0:46:20.640
<v Speaker 1>and I could genuinely sit here and talk forever, but

0:46:20.680 --> 0:46:22.440
<v Speaker 1>we won't because we've got plenty of things to do.

0:46:23.120 --> 0:46:26.800
<v Speaker 1>So what I like to end episodes with is whether

0:46:26.880 --> 0:46:29.520
<v Speaker 1>it's a piece of advice, maybe it's inspiration, maybe it's

0:46:29.560 --> 0:46:31.480
<v Speaker 1>a topic that we didn't get to and you're really

0:46:31.520 --> 0:46:33.839
<v Speaker 1>heavy on your heart, whatever it may be. I give

0:46:33.880 --> 0:46:36.200
<v Speaker 1>the floor to you and we close out our episode

0:46:36.200 --> 0:46:38.280
<v Speaker 1>that way, so the floor is yours.

0:46:39.640 --> 0:46:43.600
<v Speaker 2>I think one thing that I've learned throughout my experience

0:46:43.600 --> 0:46:46.040
<v Speaker 2>with my son and throughout life in general with other

0:46:46.040 --> 0:46:49.520
<v Speaker 2>hard things, is really what I've built the podcast on

0:46:49.560 --> 0:46:54.080
<v Speaker 2>as well, is the importance of talking about or at

0:46:54.160 --> 0:46:58.640
<v Speaker 2>least naming your own feelings and removing the shame from them.

0:46:58.719 --> 0:47:01.200
<v Speaker 2>I think a lot of people feel a lot it's

0:47:01.239 --> 0:47:03.280
<v Speaker 2>pretty cringey to be like, oh, it was the worst

0:47:03.320 --> 0:47:05.920
<v Speaker 2>possible news I could receive that he would be disabled.

0:47:05.920 --> 0:47:08.799
<v Speaker 2>That doesn't sound good, but it doesn't feel that great either,

0:47:08.880 --> 0:47:10.560
<v Speaker 2>especially as a parent, And we were like, I love

0:47:10.600 --> 0:47:13.920
<v Speaker 2>this child, and I had these feelings that were so dark,

0:47:14.239 --> 0:47:16.719
<v Speaker 2>and I feel shameful about it. But I think it

0:47:16.800 --> 0:47:19.120
<v Speaker 2>is so key to be able to talk about it

0:47:19.120 --> 0:47:22.120
<v Speaker 2>with a trusted person, to write it out, to allow

0:47:22.160 --> 0:47:25.360
<v Speaker 2>yourself to acknowledge those emotions, on those feelings, and to

0:47:25.400 --> 0:47:28.520
<v Speaker 2>realize that those are very normal. I would venture to

0:47:28.560 --> 0:47:31.360
<v Speaker 2>guess any kind of emotion or feeling that a parent

0:47:31.400 --> 0:47:34.200
<v Speaker 2>has around their child with the disability or medical complexity,

0:47:35.000 --> 0:47:37.319
<v Speaker 2>it has been There's no feeling that's not been felt

0:47:37.360 --> 0:47:40.840
<v Speaker 2>by someone else before. And I think once you shine

0:47:40.840 --> 0:47:43.640
<v Speaker 2>a light on those emotions by sharing with others or

0:47:43.680 --> 0:47:45.759
<v Speaker 2>writing it down or just accepting it in some way,

0:47:46.280 --> 0:47:48.359
<v Speaker 2>I think it makes it so it isn't in this dark,

0:47:48.400 --> 0:47:51.200
<v Speaker 2>scary spot anymore. It has light on it, and it's like,

0:47:51.200 --> 0:47:52.600
<v Speaker 2>you know what it is, what it is, this is

0:47:53.080 --> 0:47:55.560
<v Speaker 2>this is how I experienced it, and that's okay. And

0:47:55.600 --> 0:47:57.720
<v Speaker 2>so I would hope that for people that they would

0:47:57.760 --> 0:48:01.160
<v Speaker 2>have a safe space to be able to express those things,

0:48:01.320 --> 0:48:03.879
<v Speaker 2>or at least be able to see other people expressing them.

0:48:03.880 --> 0:48:07.000
<v Speaker 2>That's one thing that again I have found to be

0:48:07.040 --> 0:48:09.239
<v Speaker 2>really powerful, like with the podcast and then other ways

0:48:09.280 --> 0:48:12.680
<v Speaker 2>of sharing other people talking on social media, is the

0:48:12.719 --> 0:48:16.160
<v Speaker 2>power of hearing someone else talk about their story or

0:48:16.200 --> 0:48:19.839
<v Speaker 2>write about it, and then to see things that you

0:48:19.880 --> 0:48:22.160
<v Speaker 2>resonate with and to be like, oh, I'm not alone,

0:48:22.440 --> 0:48:25.120
<v Speaker 2>and almost like seeing someone else express that can feel

0:48:25.160 --> 0:48:27.440
<v Speaker 2>a kin to you expressing it and be like that

0:48:27.440 --> 0:48:30.160
<v Speaker 2>feels really good to have words put to that shameful emotion.

0:48:31.000 --> 0:48:33.879
<v Speaker 2>And so I would encourage parents and anyone going through

0:48:33.880 --> 0:48:37.960
<v Speaker 2>something hard to find that space and the space internally

0:48:38.080 --> 0:48:40.160
<v Speaker 2>to really sit with those emotions and to show a

0:48:40.160 --> 0:48:41.879
<v Speaker 2>little self compassion for where you are.

0:48:43.000 --> 0:48:45.719
<v Speaker 1>Yes, that was a great way for us to end.

0:48:45.960 --> 0:48:48.080
<v Speaker 1>It reminds me of something I always yell at myself

0:48:48.120 --> 0:48:50.759
<v Speaker 1>sometimes when I live in my shame where I don't

0:48:50.800 --> 0:48:53.800
<v Speaker 1>allow myself to feel things. I'm like, feel your feelings.

0:48:53.840 --> 0:48:55.279
<v Speaker 1>I just yell at myself in the mirror. I'm like,

0:48:55.400 --> 0:48:58.320
<v Speaker 1>just feel it and it'll be okay. So that feels

0:48:58.360 --> 0:49:00.680
<v Speaker 1>like an appropriate moment for this dude to yell at

0:49:00.680 --> 0:49:04.000
<v Speaker 1>yourself in the mirror and be like, feel your feelings. Yes,

0:49:04.200 --> 0:49:07.440
<v Speaker 1>for sure, Oh Madamin, thank you for joining me, Thanks

0:49:07.440 --> 0:49:09.920
<v Speaker 1>for sharing your story and doing what you do. You

0:49:09.920 --> 0:49:12.239
<v Speaker 1>guys can check out her podcast, The Rare Life, and

0:49:12.880 --> 0:49:15.000
<v Speaker 1>I'll be sure to put her social media and stuff

0:49:15.040 --> 0:49:16.480
<v Speaker 1>and here so you can follow her and reach out

0:49:16.520 --> 0:49:18.799
<v Speaker 1>to her too. But thank you for your time, thanks

0:49:18.840 --> 0:49:21.120
<v Speaker 1>for being here, and I really love what you're doing.

0:49:21.760 --> 0:49:23.440
<v Speaker 2>Thank you so much. Has been such an honor.

0:49:23.920 --> 0:49:25.759
<v Speaker 1>I'm so happy you're here each week listening to these

0:49:25.800 --> 0:49:29.120
<v Speaker 1>stories and hopefully healing on your own journey by way

0:49:29.200 --> 0:49:33.719
<v Speaker 1>of hearing others' potentially shared experiences. That's what this whole

0:49:33.719 --> 0:49:36.440
<v Speaker 1>podcast is about. Be sure to subscribe and give the

0:49:36.480 --> 0:49:39.160
<v Speaker 1>podcast five Stars I Love y'all. Talk to you next

0:49:39.160 --> 0:49:40.440
<v Speaker 1>week with Sarah Todd Hammer