Latest / Motherhood Uncut / Mothering a Child with Disabilities with Kelley Coleman | Motherhood Uncut Podcast | Season 5 Episode 4

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Mothering a Child with Disabilities with Kelley Coleman | Motherhood Uncut Podcast | Season 5 Episode 4 · Motherhood Uncut

0:00
SPEAKER_01: Hey, it's Kate Kripke and welcome to the Motherhood Uncut podcast.
0:04
SPEAKER_01: Here we are committed to making sure that nobody ever needs to mother alone.
0:09
SPEAKER_01: We bring to you wherever you are the conversations that we need to have to survive and thrive in motherhood, but so often keep silent about the things that make us laugh, cry, celebrate, rage about, and reflect on, the things that bring tears of sorrow and tears of joy, confusion and wonder, fear and gratitude.
0:28
SPEAKER_01: We want you to feel good about your mothering and to feel supported along the often clunky adventure of life as a mom.
0:36
SPEAKER_01: In Motherhood Uncut, you can expect eye-opening conversations with experts in parenting, mental health, and women's health, as well as moving and inspiring conversations with moms who are out there paving the way for their children.
0:48
SPEAKER_01: You'll likely agree with some of what you hear and also disagree with some of what you hear.
0:53
SPEAKER_01: All we ask is this that you come with an open mind and boatloads of compassion for yourself and mothers everywhere.
1:00
SPEAKER_01: Pull up a chair, pour yourself a glass of wine or a cup of tea, put on your walking or running shoes, turn up the volume in your car during your commute or the pickup line at school.
1:09
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1:10
SPEAKER_01: And Mother of Us, we have got you.
1:58
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2:00
SPEAKER_01: It's an episode you don't want to miss.
2:02
SPEAKER_01: So as always, grab up a chair, pull up a chair, and come mother with us.
2:10
SPEAKER_01: Hey listeners.
2:11
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2:18
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2:21
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2:28
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2:32
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2:43
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2:48
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2:58
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3:05
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3:12
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3:18
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3:30
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3:32
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3:36
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3:40
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3:44
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3:55
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3:57
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4:00
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4:32
SPEAKER_00: Hi, Kelly.
4:34
SPEAKER_00: Hi, thank you so much for having me.
4:37
SPEAKER_00: I'm so excited for our conversation.
4:40
SPEAKER_01: I am so excited to talk with you.
4:42
SPEAKER_01: And um for our listeners, uh, one of the things that happens so often for us in this podcast is that we get these email requests, you know, they come in all the time of people's assistants or people's managers or people themselves suggesting a topic, suggesting a perspective or a topic or a place of wisdom or a work that they think that our audience would benefit from.
5:10
SPEAKER_01: And every once in a while, a real zinger comes in, a real winner comes in.
5:18
SPEAKER_01: And that's not to say that you know everyone has something to offer, but we are pretty specific and intentional about the conversations that we have here.
5:26
SPEAKER_01: And the, I think it was your assistant first, Kelly that um sent us that email.
5:32
SPEAKER_01: It was like from the moment that came in, we were like, yes.
5:36
SPEAKER_01: And then I did some due diligence and went back and listened to some of your previous podcasts and the way you approach your topics and you as a person.
5:44
SPEAKER_01: And I was like, this, this is this is our this is our gal.
5:48
SPEAKER_01: So thank you for taking some time.
5:50
SPEAKER_01: I'm gonna turn the torch to the torch.
5:52
SPEAKER_01: I'm gonna turn the mic to you in just a moment.
5:54
SPEAKER_01: But just for our listeners, let me just introduce you briefly before we go into the underneath layers of who you are.
6:01
SPEAKER_01: Um, but Kelly it Kelly Coleman is a feature film development executive, turned author and advocate for parent caregivers and individuals with disabilities.
6:09
SPEAKER_01: And this is a big part that we're gonna talk about today is what is it like to raise a child with a disability and how does that kind of universal human experience connect you to moms everywhere?
6:21
SPEAKER_01: Um, so we're gonna talk a lot about that.
6:24
SPEAKER_01: Kelly has a book, Everything No One Tells You About Parenting a Disabled Child, Your Guide to the Essential Systems, Services, and Support.
6:31
SPEAKER_01: We're gonna link that in the show notes, and I'm sure we'll dive into some of the pieces that come up for you in that book.
6:37
SPEAKER_01: I think a lot of people, by the way, um, can often not know what to do with the reality of having a child with disabilities, and especially those moms who are just getting this information, right?
6:50
SPEAKER_01: So we might have women who have been at this for a while and have found some systems and some ways of moving through life with a child with disability.
6:57
SPEAKER_01: And then we have moms who are listeners who are curious or wondering if something's going on, or just received some sort of more clinical or diagnostic information.
7:09
SPEAKER_01: So I know that you're gonna jump into that.
7:12
SPEAKER_01: Um, this book you wrote draws upon over a decade of experience, including your own, her own experience, parent and child with multiple disabilities.
7:20
SPEAKER_01: Kelly lives in Los Angeles with her husband, two boys, and her son's trustee service dog.
7:27
SPEAKER_01: Welcome, Kelly.
7:28
SPEAKER_00: Yes, thank you again.
7:30
SPEAKER_00: As you were speaking, literally the clouds parted and rays of sunshine came in.
7:36
SPEAKER_00: So clearly, this is a sign that this is a great conversation that the two of us need to be sitting down and having.
7:42
SPEAKER_00: So thank you.
7:43
SPEAKER_01: That's you're welcome.
7:45
SPEAKER_01: And again, it's just it's one of my talking with women like you is one of my favorite things to do.
7:49
SPEAKER_01: So thank you for the time.
7:51
SPEAKER_01: Let's start, Kelly, by you just telling us who you are and why you're here on this podcast talking to me today.
8:01
SPEAKER_01: So I I guess the more specific question I'm asking just to get started is what has your mothering journey been in a nutshell?
8:08
SPEAKER_01: Because we could take our entire time talking about that.
8:11
SPEAKER_01: But how what got you to where you are today?
8:14
SPEAKER_01: Tell us your mothering story.
8:18
SPEAKER_00: Um, as you were asking that question, I was quickly thinking of what is the succinct answer of what has my mothering journey been?
8:25
SPEAKER_00: Yeah.
8:26
SPEAKER_00: And the first thing that popped into my head was chaos and beauty.
8:33
SPEAKER_00: There you are.
8:34
SPEAKER_01: There's the both and right there.
8:36
SPEAKER_01: It is.
8:37
SPEAKER_00: That is kind of the ultimate both and um my mothering journey started with our older son Sean, who is now 12, who does not have any disabilities, and um is hilarious and academic and creative and all the things.
8:56
SPEAKER_00: And his younger brother Aaron, who's now 10 years old, is hilarious and unique and wonderful in all of his ways.
9:05
SPEAKER_00: He also has multiple disabilities.
9:08
SPEAKER_00: When our first son was born and he was, let's stereotype for a moment and easy baby, and we're like, oh, our kid sleeps and he eats and he was talking way before anybody else.
9:21
SPEAKER_00: And we're we're such good parents.
9:24
SPEAKER_00: We have this all figured out.
9:25
SPEAKER_00: Um, because clearly this was all our doing.
9:28
SPEAKER_01: Isn't it funny how we do that, by the way?
9:31
SPEAKER_01: Like we project everything we feel about ourselves onto our children.
9:36
SPEAKER_01: Everything that's happening for them onto us.
9:38
SPEAKER_01: It's like we're such good parents because as if the definition of being a good parent was having an easy child.
9:45
SPEAKER_00: Yes.
9:47
SPEAKER_00: Wouldn't that be nice?
9:49
SPEAKER_00: Um, uh well, no, I guess it wouldn't be nice because then I I would have gone from I'm I am the most amazing parent ever, to I am useless.
9:57
SPEAKER_00: Um, you know, we have Sean who started talking at 10 months old before he even had hair or teeth.
10:03
SPEAKER_00: And then we have Aaron, who is equally as incredible and awesome and fun and all the great things.
10:11
SPEAKER_00: Aaron has multiple disabilities, and at age 10, we are still working on his communication system, which doesn't include verbal speech, but you know, a device and pointing and gestures and sounds and all the things.
10:26
SPEAKER_00: I knew from day one just the mom gut feeling, something's going on, and nobody believed me for a while, um, which is is scary and gaslighty, and plus you've got all the pregnancy hormones and recovery and all of that, plus a toddler, plus a baby who sleeps too much, which sounds ridiculous, but we knew he was sleeping way too much.
10:57
SPEAKER_00: I was having to wake him up to eat.
10:59
SPEAKER_00: That was a struggle.
11:01
SPEAKER_00: Um and we started eventually putting all these pieces in place that have added up to um he's a happy, healthy 10-year-old with a yet undiagnosed genetic syndrome.
11:17
SPEAKER_00: And within that umbrella, we have autism, epilepsy, cerebral palsy, cortical vision impairment, microcephaly, feeding tube, sensory, cognitive processing.
11:27
SPEAKER_00: Like he is an overachiever.
11:29
SPEAKER_00: He's like, I'm just gonna check all the boxes.
11:31
SPEAKER_00: And within that, we still don't have our overall diagnosis, despite having done every test that science has has available.
11:40
SPEAKER_00: Um, so it turns out awesome parenting doesn't just mean your kid is easy.
11:48
SPEAKER_00: Awesome parenting means getting to know your kid as they are.
11:52
SPEAKER_00: And wait, wait, pause.
11:55
SPEAKER_01: I mean, it like brought tears to my eyes.
11:58
SPEAKER_01: Can you say that again?
12:00
SPEAKER_01: Awesome parenting is what?
12:03
SPEAKER_00: Is not about having an easy kid, it's about getting to know your kid as they are.
12:10
SPEAKER_01: Awesome parenting is about getting to know your kid as they are.
12:18
SPEAKER_01: Dang, I love that.
12:20
SPEAKER_01: I just came up with that.
12:21
SPEAKER_01: That's good.
12:21
SPEAKER_00: I'm gonna write that down.
12:22
SPEAKER_01: It's not only good, and I'm sure we'll after you're I'm sure we'll maybe circle back to this, it's sort of the only way to feel like a good mom.
12:33
SPEAKER_01: And we all want to feel like good moms, right?
12:36
SPEAKER_00: We do we really want that.
12:38
SPEAKER_01: I'm gonna circle back to that.
12:39
SPEAKER_01: So sorry to interrupt you, but that was so good.
12:43
SPEAKER_01: So good, Kelly.
12:44
SPEAKER_01: Okay.
12:45
SPEAKER_00: And I'm gonna underline you're so good that you just said we and I'm I'm gonna start crying.
12:49
SPEAKER_00: I'm a crier.
12:50
SPEAKER_00: Um, we all want to feel like really good moms.
12:54
SPEAKER_00: I felt like a great mom with my first kid.
12:57
SPEAKER_00: With my second kid, I almost immediately felt like a failure.
13:02
SPEAKER_01: Yes.
13:03
SPEAKER_00: And only recently did someone put a name to that feeling that I had for months that I described as, you know, I felt like I'm just falling into this bottomless pit.
13:14
SPEAKER_00: Um, is I felt inadequate.
13:18
SPEAKER_00: My kid didn't have any vision because of his cortical processing, and I felt inadequate.
13:26
SPEAKER_00: He had to get a feeding tube.
13:27
SPEAKER_00: I didn't know anything, I never heard of a feeding tube.
13:30
SPEAKER_00: I felt inadequate at every turn, and the paperwork and the social services and the insurance, and like at every single turn, I felt inadequate, and all I was I'm gonna cry.
13:45
SPEAKER_00: All I was hearing over and over was, I am so sorry.
13:51
SPEAKER_00: Yes, and that is all anyone says to you, and even the people who don't say anything, they give you that look of pity and like, oh, you poor thing.
14:04
SPEAKER_00: And I'm like, can somebody just tell me that my baby has amazing hair?
14:09
SPEAKER_00: Because he has amazing hair.
14:13
SPEAKER_02: You know what I mean?
14:15
SPEAKER_01: Kelly, there's so much gold here.
14:18
SPEAKER_01: I have a feeling our whole conversation is going to be filled with gold and we're not gonna get to all the nuggets, but you know, this inadequacy, this sort of like feeling like a failure really comes for this idea that if we know what we're doing and if we're doing it well, and if we're good mothers, our children will sleep, our babies will eat when they're supposed to, our babies and children will start speaking at a certain age, or they will look you in the eye, or they will laugh when they're quote unquote supposed to laugh, and will cry when they're quote unquote supposed to cry, but also will stop crying when they're supposed to stop crying when we do the right things to get them to stop crying.
15:07
SPEAKER_01: So if we could just take that for a moment and look at look at how how much of a setup that is for us to care more about quote unquote getting it right and knowing what to do and getting our kids to do the quote unquote right things, we care more about that than knowing our kid as they are.
15:35
SPEAKER_01: We care more about control than connection.
15:39
SPEAKER_01: Yes.
15:40
SPEAKER_01: And whether you're a mom with a kid with multiple disabilities like you were with Aaron, or a mom with a kid who on paper is quote unquote normal, don't like that word, but I'm just gonna use it because it's a it's a layperson word.
15:58
SPEAKER_01: Whether or not it's not about the thing outside of us that's happening that leads to us feeling so awful and so inadequate and like such a failure.
16:08
SPEAKER_01: It's how we're perceiving those things and ourselves in relation to them.
16:12
SPEAKER_01: Now that's a big concept.
16:14
SPEAKER_01: So we're gonna have to get it a little more clear for folks, but that's what we're talking about, right?
16:19
SPEAKER_00: That is absolutely what we are talking about.
16:24
SPEAKER_00: And I think, you know, circling back to the universality of all of this, many of your listeners, you know, certainly no one has a kid with my kids' syndrome because there might not be anyone else in the world.
16:36
SPEAKER_00: But that is such a commonality of this feeling of we have to get it right and we're working so hard to get it right.
16:44
SPEAKER_00: I have a kid who's literally has never eaten food.
16:48
SPEAKER_00: Yeah, right.
16:49
SPEAKER_00: And no matter how hard I try, he's going to choose to not keep eating food.
16:55
SPEAKER_01: So if you based your sense of success on a uh on how you felt as a mom, on whether or not he was eating food, excuse my language, but you'd be fucked.
17:04
SPEAKER_00: 100%.
17:07
SPEAKER_01: Can I ask you a question?
17:09
SPEAKER_01: So back in the early days when Aaron was um a baby, and everyone kept saying, I'm sorry.
17:16
SPEAKER_01: I'm so sorry, I'm so sorry.
17:18
SPEAKER_01: And you felt so much emotion when you said that.
17:22
SPEAKER_01: And we, and and I think it's very clear now and will become more clear the more we get to know you why that statement was so painful.
17:33
SPEAKER_01: But what was the message you were hearing behind those words?
17:38
SPEAKER_01: I'm so sorry.
17:40
SPEAKER_00: The message that I was hearing, which is not how I feel now, the message I was hearing is disability is the worst thing that could happen to your family.
17:54
SPEAKER_00: Your child is a tragedy.
18:00
SPEAKER_00: And you just sit there, and you know that's not true.
18:10
SPEAKER_00: Most of us have experience with disability going into this, so of course I was coming from this rotten place of ignorance, so I didn't know anything, and you're taking this all in, and your your episode about mom rage connected with me so much.
18:30
SPEAKER_00: I was literally on a walk with my dog and like crying as I'm walking down the busy streets, and you're talking about all of these things that we bury, and as a mom of a kid with disabilities, even before we know what they are, and we're just even questioning or wondering or whatever it is, you bury all of that because there's also this expectation that you have to carry the torch that I am thrilled about this.
19:03
SPEAKER_00: This is great, I got this, everything is terrific.
19:07
SPEAKER_00: All or nothing, either or, right?
19:09
SPEAKER_00: All or nothing, because that's what we're supposed to do as moms and as women.
19:15
SPEAKER_02: Yes.
19:17
SPEAKER_00: And there is no when you have a child that requires 24-7 care, you can't escape into the other room to scream into a pillow.
19:33
SPEAKER_00: And where does that all even go?
19:37
SPEAKER_00: Yeah, and there is so much that I think most of us don't even know that we are dealing with and processing and internalizing because it is so constant, and the day-to-day can be so all-consuming when your kid is randomly throwing up five or six times a day, when your kid is having seizures, you're calling 911, the feeding tube supply company didn't deliver things, you're arguing with insurance when it is constant, and the only thought when you do have a break is sleep.
20:18
SPEAKER_00: Many moms, especially, never get a chance to process all of this that has come in, and there may not be a healthy way to let it out and process, and it just sucks so much joy out of things in such an unnecessary way when everybody's just saying, I'm so sorry about your baby.
20:50
SPEAKER_01: Yeah, yeah.
20:52
SPEAKER_01: I mean, what I hear you describing, Kelly, is not just a trauma.
20:57
SPEAKER_01: Of course, there's a lot of physical traumas that your son went through and that you went through in relationship to your son, but there's a real psychic trauma here.
21:09
SPEAKER_01: And when the nurse or the person says, I'm so sorry, it comes from this belief that you said just a moment ago.
21:21
SPEAKER_01: I'm so sorry that your life is ruined.
21:25
SPEAKER_01: Yes, I'm so sorry that you have this tragedy to deal with for the rest of your life.
21:34
SPEAKER_01: So, but I'm curious, to me, that statement comes from someone who hasn't been there.
21:43
SPEAKER_01: Because you would never say, if you met a mom tomorrow that had a son with multiple disabilities, you would never say, I'm so sorry.
21:52
SPEAKER_01: Right?
21:53
SPEAKER_01: If that nurse, that person that had been speaking with you had gone through this.
22:00
SPEAKER_01: And gotten to the place that you are.
22:01
SPEAKER_01: And I want us to dive in today about what the what the story has been from then till now, because clearly you've taken the reality of your situation and you've and you now know your son as he is and are embracing that.
22:18
SPEAKER_01: Something's helped you get there.
22:20
SPEAKER_01: So I want to talk about that.
22:21
SPEAKER_01: But if this nurse had been there, what would she have said to you instead of I'm so sorry?
22:30
SPEAKER_00: She would have said, I believe you.
22:34
SPEAKER_00: She would have said, I hear you.
22:37
SPEAKER_00: How are you feeling?
22:39
SPEAKER_00: Certainly when if if I meet someone at the park and I see where they tell me their child is disabled, I don't say I'm sorry.
22:51
SPEAKER_00: I also don't say congratulations.
22:55
SPEAKER_00: Because it is so rotten to be the person in the center of the emotional circle when everybody else is dumping their emotions into you.
23:08
SPEAKER_02: Yes.
23:09
SPEAKER_00: And there is so much stress.
23:11
SPEAKER_00: And I will I will name it as trauma, but please correct me if I'm not naming it properly, of feeling for years that you are having to manage everyone else's fragile emotions.
23:26
SPEAKER_00: However, I feel about the situation, I just need to be validated in that.
23:31
SPEAKER_00: I don't need you to tell me, oh, my cousin's kid took this supplement and now he's cured.
23:37
SPEAKER_00: No.
23:38
SPEAKER_00: I don't need you to say, congratulations, I have a disabled kid and it's the best thing ever.
23:43
SPEAKER_00: Because that also might not be the emotion that's resonating with me.
23:48
SPEAKER_00: I just need it's also okay to say, I don't know what to say.
23:55
SPEAKER_00: So I'm gonna sit here with you.
23:58
SPEAKER_01: You know what you're you know what's striking, Kelly, as you talk about this, is we started this conversation today with this profound mic drop.
24:11
SPEAKER_01: Being a good mom means that, and again, quotes around that term, right?
24:17
SPEAKER_01: I think we said awesome mothering.
24:19
SPEAKER_01: So being a good mom or awesome mothering is getting to know your kids as they are.
24:24
SPEAKER_01: Being an awesome friend is getting to know your friend who's the mother that has a child with multiple or even one disability as they are.
24:35
SPEAKER_01: Being the awesome nurse is getting to know your patient as they are, which is has nothing to do with what you're feeling, and everything to do with making space and being curious about what's happening for the other person without making assumptions and not to your point.
24:56
SPEAKER_01: That statement, I mean, we see this all the time, right?
24:59
SPEAKER_01: We see this with women who have miscarriages and then become pregnant.
25:03
SPEAKER_01: We see this with, you know, whatever, all kinds of situations that can be considered as big losses or grief or trauma.
25:13
SPEAKER_01: And people will try to say something to make sure that the other person doesn't feel bad.
25:20
SPEAKER_01: As if they have that power, A.
25:24
SPEAKER_01: And B, as if it's wrong or bad to feel bad.
25:28
SPEAKER_00: Yes, absolutely.
25:30
SPEAKER_00: And I think we as humans, and certainly as moms, and certainly as moms of kids with disabilities, um, we need to be validated in whatever the things are that we are feeling because that is real to me.
25:50
SPEAKER_00: And if you say, Oh, don't feel sad, or well, at least, or whatever thing is that you're about to say to me, what you're saying to me is it's not okay for you to feel this way.
26:02
SPEAKER_00: And then what my brain is doing is say, cool, I'm just gonna bury this in, and I'm just not gonna share this with people.
26:10
SPEAKER_00: And you are making me feel worse by trying to tell me not to feel this way.
26:15
SPEAKER_01: That's right.
26:16
SPEAKER_01: Aw, so much.
26:18
SPEAKER_01: So before we talk about everything you've learned from this, and you know, you said awesome mothering is getting to know your kid as they are.
26:28
SPEAKER_01: Actually, we'd love to learn more about Aaron.
26:30
SPEAKER_01: I would love for us to hear, because sometimes we hear the lay person, right?
26:35
SPEAKER_01: The general public will hear kid with multiple disabilities and hear everything that you mentioned and only hear that.
26:43
SPEAKER_01: And I think it's a really beautiful opportunity for us to hear more about Aaron in all of his Aaron-ness.
26:49
SPEAKER_01: So I want to hear about that too.
26:51
SPEAKER_01: But you did say something um early on that I'm really curious about.
26:55
SPEAKER_01: So you said, I knew that there was something happening, and no one believed me.
27:01
SPEAKER_01: One of the things that I talk a lot about in my work, Kelly, with moms is the difference between intuition and anxiety.
27:09
SPEAKER_01: And a lot of times in my work, I have mothers, women who are pregnant, or women who have small kids who are have a fear-based sense that there's something wrong.
27:23
SPEAKER_01: The what of thinking, the kind of hyper-analyzing, all the things, the, and that comes from many of us without even realizing it, that comes with an assumption that there must be something wrong, right?
27:37
SPEAKER_01: That there's no, there's no way my child could be okay.
27:41
SPEAKER_01: And of course, that might have a lot of older limiting beliefs about them and the world, all that stuff, right?
27:47
SPEAKER_01: But that hyper-analyzing anxiety-obsessive type mental health challenge.
27:54
SPEAKER_01: That's not intuition.
27:56
SPEAKER_01: So we can get confused about the difference between anxiety and intuition.
28:01
SPEAKER_01: So I'm curious if you could speak a little bit more to this experience you were having about just knowing.
28:09
SPEAKER_01: Just knowing.
28:11
SPEAKER_00: Can you tell us a little bit more about that?
28:14
SPEAKER_00: My pleasure.
28:15
SPEAKER_00: And no one has ever asked me this before.
28:17
SPEAKER_00: So thank you for asking this.
28:20
SPEAKER_00: And also, as if your listeners don't know, please internalize this.
28:26
SPEAKER_00: If you are not sure, if it is intuition or anxiety, or if you're like, whoa, I got a lot of anxiety, when you can talk to other trusted people, be sure it's someone who you're trusting.
28:38
SPEAKER_00: If Aunt Sally is going to make you feel worse, don't talk to her about this.
28:42
SPEAKER_00: But anxiety is so real and it is not your fault, and it is not always within your control.
28:53
SPEAKER_00: So lean into those who can help you to determine is this intuition, is this anxiety?
29:00
SPEAKER_00: Because then you can deal with what are the facts that are on the table and how those things are playing into this.
29:09
SPEAKER_01: Yes.
29:09
SPEAKER_01: And one more thing I want to add to that, just to sort of set you up.
29:12
SPEAKER_01: I'm going to tee you up because the way I talk about this is intuition isn't anxious.
29:19
SPEAKER_01: Correct.
29:20
SPEAKER_01: Intuition is a knowing.
29:22
SPEAKER_01: It's just a knowing.
29:23
SPEAKER_01: It's not a what if.
29:26
SPEAKER_01: Oh, it's not a ruminating about all the what ifs that then speed up our heart rate and make us not think clearly.
29:32
SPEAKER_01: It's actually the opposite.
29:33
SPEAKER_01: It is a clarity of thought.
29:35
SPEAKER_01: It is just a knowing.
29:37
SPEAKER_01: So it feels different in our body.
29:39
SPEAKER_01: Intuition feels different in our body than anxiety feels.
29:42
SPEAKER_01: That's how I often talk about it.
29:44
SPEAKER_01: You're nodding, so it sounds like that resonates for you.
29:47
SPEAKER_00: That resonates so much.
29:49
SPEAKER_00: And the word that I use to describe that feeling, and especially at that particular moment in time, I was so grounded in that thought.
29:59
SPEAKER_02: Yeah.
30:00
SPEAKER_00: And I wasn't trying to convince myself of yes or no, or is this right or wrong?
30:07
SPEAKER_00: It was such a grounded and clear thought.
30:10
SPEAKER_00: Yeah.
30:11
SPEAKER_00: And something that was so meaningful and frankly probably saved my child's life was our pediatrician who works with many types of kids.
30:26
SPEAKER_00: She is not specific to kids with disabilities.
30:30
SPEAKER_00: And I I kept telling her this and this feeling of intuition.
30:35
SPEAKER_00: And she said, all of the tests we're doing are checking out that say that he's fine.
30:42
SPEAKER_00: That said, you can show up in our office as often as you need.
30:49
SPEAKER_00: We will never discount you, we will never tell you to leave, we will always see you, and we will always see your child, and we will always listen to you.
31:00
SPEAKER_01: What did that do for you?
31:02
SPEAKER_00: Everything.
31:17
SPEAKER_01: Beautiful.
31:19
SPEAKER_00: And whether that is your pediatrician, your local librarian, your best friend, your partner, your parent, like whomever, find that person who will listen to you and run the tests if they need to be run, will do the exact same things over again.
31:43
SPEAKER_00: So that when I'm gonna cry again, when we showed up in her office with my baby and my toddler, who was making pretend cupcakes in the exam room chair, and we ate pretend cupcakes for a very long office visit.
31:58
SPEAKER_00: Um when I told her, here is how much he is eating, she believed me.
32:08
SPEAKER_00: I wrote down the times and amounts and the things, and she believed me just as she said she would.
32:17
SPEAKER_00: And we were checked into the hospital that night.
32:20
SPEAKER_00: The feeding tube was placed that night, and here I go, this is hard.
32:32
SPEAKER_00: Um, the drive to the hospital was both terrifying and such a relief because I knew this was coming.
32:46
SPEAKER_00: I didn't know what it would look like.
32:48
SPEAKER_00: Yes.
32:50
SPEAKER_00: But getting to the hospital and the the tubes and the specialists and the nurses and the brain scans and like all the things, it felt exactly how you imagine it feels.
33:05
SPEAKER_00: And it was also a sense of relief that I now realize was the first, like, we are gonna whack away at this inadequacy because here's a literal team of people who will help you and who will believe you, and who will put a feeding tube in your kid because he needs to live.
33:31
SPEAKER_02: Wow.
33:33
unknown: Wow.
33:33
SPEAKER_00: Oh, and by the way, feeding tubes sound horrifying if you've never heard of them and they're actually no big deal.
33:39
SPEAKER_01: Well, isn't that amazing?
33:40
SPEAKER_01: I mean, here, I you know, one of the first things I felt about you even before we met face to face, but I was sort of listening to some other podcasts you've done, is the the strength, the internal, not the facade, but the internal strength that comes from resilience.
33:58
SPEAKER_02: Yes.
33:58
SPEAKER_01: And this last statement is a very clear example of that.
34:02
SPEAKER_01: You know, this like a feeding tube is not that big of a deal.
34:05
SPEAKER_01: I mean, humans are a our capacity for resilience is amazing.
34:12
SPEAKER_01: You know, before you become a mother, if someone had said to you, Kelly, your second baby, these are all the things, you'd be like, I can't handle that.
34:20
SPEAKER_01: A feeding tube, I can't, and here you are with so much resilience because of what, because of what you've moved through.
34:32
SPEAKER_00: It's really moving.
34:34
SPEAKER_00: Thank you.
34:36
SPEAKER_00: And there are so many mothers and parents and partners who have similar stories or who are on this path.
34:50
SPEAKER_00: And also, there is no like hierarchy of disability.
34:54
SPEAKER_00: And if you're listening to this and saying, oh, well, my kid only has X or Y or Z, then oh, my kid's not quote unquote as disabled, so I shouldn't feel bad, or oh, she's got it worse than nope.
35:06
SPEAKER_00: Like my kid, both of them, and it's important to talk about both of my children.
35:11
SPEAKER_00: Yes, yes.
35:12
SPEAKER_00: Thank you for saying that totally.
35:15
SPEAKER_00: Like they wake up and they are happy to be in the world, and they're awesome humans and a pleasure to have around.
35:23
SPEAKER_00: And even with all of our stuff, sometimes our day-to-day is really hard, but most days it's busy and it's constant and it's exhausting, but it is joyful and beautiful and all of the things because disability, just like any other thing, is all the things.
35:47
SPEAKER_01: Kelly, uh can you so so uh you have just given us a little peephole into current day life in Kelly Coleman's home.
36:01
SPEAKER_01: And in many ways, you're describing a very typical home, right?
36:09
SPEAKER_01: You're describing all the stuff we got good days and bad days, we have messiness and organization, we have laughter and tears, we have busy when I'm exhausted and downtime.
36:22
SPEAKER_01: You're really describing what most families are at their core, which is all of it.
36:31
SPEAKER_02: Yes, right.
36:32
SPEAKER_01: So you your pediatrician heard you, she believed you, you went to the hospital, there was a team there, they took action, you felt this beautiful combination between between fear and uncertainty and anxiety and grief and relief.
36:54
SPEAKER_01: So here's that oh, we can feel all things at once.
36:57
SPEAKER_01: And then things begin to happen differently.
37:00
SPEAKER_01: So your your life was no longer about around trying to get people to listen to you and trying to get people to understand that what you knew was happening was really happening.
37:08
SPEAKER_01: You didn't know what it was, but that something was okay.
37:10
SPEAKER_01: Now you're moving in another direction.
37:12
SPEAKER_01: So we could spend forever here, but let's just, if you could just tell us a bit about what that period of your life was like for you.
37:24
SPEAKER_00: That period was really hard.
37:28
SPEAKER_00: Loving my son is never hard.
37:30
SPEAKER_00: That was never the hard piece.
37:33
SPEAKER_00: Um whether or not your kid is disabled, that's that's not the tough part.
37:40
SPEAKER_00: The tough part is whether it's the internalized ableism and the feelings of inadequacy, and then all of the systems and the paperwork and the therapies and the fights and the trying to get in to see this office and figure out if this service is worth us paying out of pocket for, and the how do I make a future care plan for a child who at this point at age 10, I can say he will never live independently.
38:12
SPEAKER_00: Um, all of that stuff, while you're trying to maintain a child's livelihood who has medical needs, while you are trying to also be a good mom to both of them, and here's my toddler, and drive to preschool and have conversations with my husband on occasion, um, who was terrific, but in many cases, it is one parent and most often the mom who takes on the role of parent caregiver.
38:43
SPEAKER_00: And parent and parent caregiver are two very different roles.
38:50
SPEAKER_00: And for many of us, parent caregiver is a role that it gets handed to us with no training, no experience, no knowledge.
39:01
SPEAKER_00: And we suddenly find ourselves doing it full-time and for forever.
39:06
SPEAKER_00: Yeah.
39:07
SPEAKER_00: And so figuring that piece out of how do I do this full-time and forever?
39:16
SPEAKER_02: Yeah.
39:16
SPEAKER_00: And I'm only recently figuring out, and I also want to still be my own person within that.
39:23
SPEAKER_00: Um, it's a lot.
39:25
SPEAKER_00: Yes, it is.
39:26
SPEAKER_01: I love that distinction you're making between parent, what did you call it?
39:32
SPEAKER_01: Full-time parent caregiver.
39:34
SPEAKER_01: Caregiver, yeah.
39:36
SPEAKER_01: It's such an interesting um look at the different ways we show up and are required to show up, given the roles that we play in our family.
39:50
SPEAKER_01: And that's a whole other topic of podcast uh episode.
39:54
SPEAKER_01: We might have to have you back for that one, but it's a really interesting look at that.
39:59
SPEAKER_01: So during this time, you mentioned Sean, your first son.
40:06
SPEAKER_01: One of the things that I know happens for many people is there can become this feeling of guilt, this feeling of either a real or perceived experience of imbalance, right?
40:21
SPEAKER_01: Where the the kid who's got the challenging challenges get all see gets all the attention.
40:26
SPEAKER_01: And then the kid who's easy, right?
40:29
SPEAKER_01: I loved how you said, you know, you sort of caught that.
40:34
SPEAKER_01: Yeah, exactly, exactly, easy.
40:36
SPEAKER_01: Um, it because that kid's so easy, he doesn't need the same.
40:40
SPEAKER_01: So they that kid might get left sort of in the court.
40:43
SPEAKER_01: We see this happen in schools all the time, right?
40:45
SPEAKER_01: But this is a real thing for families when there is one child who has some form of special needs, whatever that is, and another who doesn't.
40:55
SPEAKER_01: How did you navigate that?
40:58
SPEAKER_00: Um, you said that in past tense, but I think it's more appropriate to say you navigate that.
41:04
SPEAKER_00: That's for work.
41:06
SPEAKER_00: No, no, no apology, no apologies.
41:08
SPEAKER_00: We don't do that.
41:09
SPEAKER_01: Um but it's such a good, it's funny, I don't even think I said sorry.
41:14
SPEAKER_01: I I but I think it's such a good recognition, I think, for all of this conversation is that all of these things you're talking about are everyday things.
41:26
SPEAKER_01: Yes.
41:26
SPEAKER_01: So none of this is past tense.
41:29
SPEAKER_01: Um, so how do you navigate that with Sean?
41:34
SPEAKER_00: Um, number one, to pat ourselves on the back is um by getting to know him as he is.
41:41
SPEAKER_01: Same, the same thing.
41:43
SPEAKER_00: It's the same exact thing.
41:46
SPEAKER_00: Thing we don't need 200 parenting tips.
41:48
SPEAKER_00: Let's just let's just do one.
41:50
SPEAKER_00: Um getting to know him as he is and trying to the fullest extent possible to be aware of what he needs when he needs it, and when and how those needs change, which is a lot, but also resting in the fact that I'm taking my cues from him.
42:12
SPEAKER_00: We have talked about all of this from a very early age.
42:16
SPEAKER_00: Um, our boys fortunately are very close and they love each other.
42:21
SPEAKER_00: Sean was 19 months old when Aaron was born.
42:25
SPEAKER_00: They don't remember anything other than driving hours for therapy appointments and the all of the things.
42:34
SPEAKER_00: Um this is just life.
42:37
SPEAKER_00: And so that I think has been a component that has facilitated this.
42:43
SPEAKER_00: Um, I'm very fortunate and it's a tremendous privilege that I'm married.
42:48
SPEAKER_00: My husband is tremendously involved in all the things, and um we are able to take individual time with each kid.
43:00
SPEAKER_00: And I do the thing Aaron wants with him, Sean does the thing with his dad, like we switch.
43:06
SPEAKER_00: But creating that, um, one super specific thing we did many years ago, which has been such a delight for all of us.
43:17
SPEAKER_00: And the whole point of it was, Sean, we are validating you and who you are and what you are interested in.
43:24
SPEAKER_00: Um, we created, we called it the Curiosity Book.
43:28
SPEAKER_00: And each page is a blank and clear plastic sleeve, and we wrote on top of pieces of paper, I'm curious about.
43:36
SPEAKER_00: And Sean would draw these pictures of lots of different types of swords or Legos or pirates or chemistry or the digestive system, like whatever it is over the years.
43:51
SPEAKER_00: And that's just what we declared that month is.
43:54
SPEAKER_00: He gets to choose, and if it is dragons for six months in a row, great.
44:00
SPEAKER_00: If it is dragons and then eyeballs and then types of moving water, like whatever it is, and then we'll say, oh, we're gonna go to the library or the beach or a museum or like whatever it is.
44:15
SPEAKER_00: And the whole point of that isn't like we're creating stuff to do.
44:19
SPEAKER_00: It's you are telling us what you are interested in, and we are telling you that we are interested in you.
44:28
SPEAKER_01: Oh gosh, it's so beautiful.
44:31
SPEAKER_01: And I'm reminded when you're talking about this, that curiosity is always gonna be the magic key.
44:42
SPEAKER_01: And you really have approached your entire mothering journey with both your sons from a place of curiosity.
44:50
unknown: Yes.
44:52
SPEAKER_00: And if we could to speak very big picture, approach disability from a place of I am curious about other humans.
45:05
SPEAKER_00: Yes.
45:06
SPEAKER_00: Then so much, if not all, of the fear and the ableism and the like, whoa, that person's in a wheelchair, has a prosthetic, uses a feeding tube, has a facial difference.
45:18
SPEAKER_00: Like all of that, it's like the air gets let out of the balloon when we are curious about real people and the real experience because everyone has a different life experience.
45:35
SPEAKER_00: And just being curious about people is natural and not scary.
45:41
SPEAKER_01: Yes.
45:42
SPEAKER_01: And our nervous system and cure, you know, again, just a little neuroscience, which I'm sure you know, but curiosity is a frontal cortex executive functioning function.
45:54
SPEAKER_01: Fear is a limbic brain, nervous system, sympathetic nervous system function.
46:01
SPEAKER_01: And so when we access curiosity, when we actually allow ourselves to become curious, the part of our brains that fuel fight, flight, and freeze turns off.
46:14
SPEAKER_01: So it really is the way to stay connected, the way to move forward, the way to engage, the way to grow is through curiosity.
46:24
SPEAKER_01: And many people, to your point, especially those of us who have not had a personal experience around this sort of topic, any kind of disability really, can go into fear mode.
46:40
SPEAKER_01: And then we stop paying attention.
46:42
SPEAKER_01: When we're in fear, we're not noticing.
46:44
SPEAKER_01: So um, Kelly, you just said something really profound.
46:50
SPEAKER_01: And I think that it's going to help us connect with this sort of final piece, final chapter of our conversation.
46:56
SPEAKER_01: You said, My boys love each other, they're really good friends.
47:03
SPEAKER_01: And you also said something like it's all they know, right?
47:07
SPEAKER_01: It's like it just is.
47:09
SPEAKER_01: And I am a really big advocate for this idea that we as mothers have to go first.
47:20
SPEAKER_01: That if I as a mother want my children to get along and love each other fully and unconditionally, I have to first learn how to love each of my children unconditionally and fully.
47:38
SPEAKER_01: Because we send these unconscious messages to our kids all the time.
47:43
SPEAKER_01: What I will say is our children breathe in, the air breathed, breathe out.
47:47
SPEAKER_01: So I don't know whether or not you're gonna embrace this or deflect it.
47:52
SPEAKER_01: Who knows?
47:53
SPEAKER_01: But I, as a maternal mental health specialist who knows the deep interconnection between maternal and child mental health, would say, your sons are close, and Sean has embraced and embodied um Aaron the way he has because you have done that first.
48:14
SPEAKER_01: So their closeness, their connection, their acceptance of each other is because you have gotten yourself to a place where you have fully accepted not only who Aaron is and clearly also who Sean is, but the feelings of discomfort that are going to come up for you when either of your children presents in ways that are unpredictable and uncertain, and you know, whatever word you want to use.
48:48
SPEAKER_01: So Sean has learned from you, I think is what I'm saying.
48:51
SPEAKER_01: There are could be, there could be a whole different story here, where Sean is afraid of his brother or so uncomfortable with the feelings that come up for him when he's sitting with him or when he comes into the room that he has to do something to get away from his discomfort, right?
49:09
SPEAKER_01: There could be a whole other story here, but that's not your family's story.
49:13
SPEAKER_01: And it started with you and your husband, of course.
49:16
SPEAKER_01: So tell us, please, if you would, what your journey has been, what you've needed to do within yourself to be able to get to this place where you are holding such love and acceptance and curiosity for what is in your family.
49:35
SPEAKER_00: What helped you get here?
49:37
SPEAKER_00: Many things.
49:39
SPEAKER_00: First, as we've said, the validating, whether it is siblings who are afraid of or upset or anxious about one another, don't tell them not to feel that way.
49:48
SPEAKER_00: Validate that.
49:50
SPEAKER_00: Um, you know, first figuring out, like, yes, this is how I'm feeling, and that is okay.
49:56
SPEAKER_00: Um, getting from the, I feel like I'm in this bottomless pit to where I am now has been a huge journey.
50:04
SPEAKER_00: The biggest factors in that journey are number one, getting to know and even following online actual real life disabled people.
50:16
SPEAKER_00: Because if we are getting information about disability from disabled individuals, then disability is just a natural part of life as it is.
50:30
SPEAKER_00: Um, that has been huge.
50:32
SPEAKER_00: Also putting systems in place for all of the paperwork and the stuff and all of the moving parts and for when things fall apart, just having systems in place has allowed me the mental space to even regain curiosity, which for years I felt like I didn't have.
50:54
SPEAKER_00: And being in fight or flight for many years.
50:58
SPEAKER_00: Right.
50:58
SPEAKER_01: And and by the way, sorry to interrupt, but makes sense.
51:01
SPEAKER_01: Yes.
51:02
SPEAKER_01: Right.
51:02
SPEAKER_01: I mean, I mean, many of us who when we are in acute crisis, that that's when fight or flight serves us.
51:09
SPEAKER_01: You're not making the crisis up.
51:11
SPEAKER_01: So that's that's your brain and body doing what it needs to do to move through a crisis.
51:16
SPEAKER_01: So it makes sense that you're in fight or flight.
51:18
SPEAKER_00: Yes.
51:19
SPEAKER_00: And I have been in constant crisis mode for the better part of the past decade.
51:24
SPEAKER_00: Yes.
51:25
SPEAKER_00: And in many ways, it has served me well.
51:28
SPEAKER_00: And it is only very recently that I feel I'm coming out of that.
51:31
SPEAKER_00: And I still jump right back into it when we need to.
51:35
SPEAKER_00: Um, and the number one thing that has gotten me from point A to point B, oh here I got him to cry again, is just loving my kid.
51:48
SPEAKER_00: And at the beginning, when everyone was telling me what a tragedy this was, I was hearing that.
51:54
SPEAKER_00: And of course I loved my baby because he's my baby, but without knowing him.
52:02
SPEAKER_00: And he, you know, he loves airplanes and is the mayor of Trader Joe's and is like loves to play in the rain and all these great things.
52:14
SPEAKER_00: And there's nothing pitiable about all of that, and just loving your kids as they are, you can't force yourself to get to a part of the journey that you are not ready to reach, but loving your kids will take you there when you are ready to be there.
52:42
SPEAKER_01: That is profound.
52:47
SPEAKER_01: Because my work is all around emotional, mental, psychological health.
52:57
SPEAKER_01: One of the things that is really hard for people to understand until they've experienced it is that all emotions are wise.
53:10
SPEAKER_01: And one of the things that you said has been helpful for you in raising these two boys who just are with each other.
53:20
SPEAKER_01: They're brothers.
53:21
SPEAKER_01: That's just what they are, just like any other pair of brothers, is you said validating how they feel.
53:28
SPEAKER_01: There we don't know how to really do that, and we don't do that well until we know how to do that for ourselves first.
53:38
SPEAKER_01: And that's part of what I hear in many ways you've done.
53:45
SPEAKER_01: Maybe you've quote unquote had to do it.
53:47
SPEAKER_01: I would be curious to know.
53:49
SPEAKER_01: Although, again, we probably won't go into it because we don't have time if you've always been this way, but it certainly sounds to me like you have given yourself permission to feel all of it, so that truly landing in the just isness of loving your son is not about what emotions you're feeling at the time.
54:15
SPEAKER_01: So that you can know you can allow yourself to truly love your son exactly as he is and feel sad, disappointed, angry, scared at the same time.
54:27
unknown: Yes.
54:29
SPEAKER_00: Absolutely.
54:30
SPEAKER_00: And the the sad, disappointed, scared, angry, all of that is not at him and who he is, is not at disability as a whole.
54:39
SPEAKER_00: That's not the tragedy, but just all of the stuff that goes into this.
54:46
SPEAKER_00: And I am allowed to be sad and fearful when he's having a seizure and we're calling 911 and when the pharmacy didn't mess up the medication.
54:56
SPEAKER_01: Not only are you allowed, but it would be really flipping weird if you weren't.
55:00
SPEAKER_01: Like a healthy response.
55:02
SPEAKER_01: That is a healthy response.
55:05
SPEAKER_01: We're just going to inject this because it's important for us all to remember.
55:09
SPEAKER_01: The definition of mental health is that we our internal emotional experience is matching what's happening externally.
55:19
SPEAKER_01: If your son is having a seizure, you're going to feel scared.
55:27
SPEAKER_01: If you didn't, I would worry about you.
55:31
SPEAKER_01: If the pharmacy is messing up all of the things and it's, you're going to feel frustrated.
55:38
SPEAKER_01: If you didn't, I would worry about you.
55:41
SPEAKER_01: So that internal experience of emotion that matches the external experience is part of how we define mental health.
55:48
SPEAKER_01: It goes the other way too.
55:50
SPEAKER_01: If your son is sitting in his wheelchair with his feeding tube and he gives you a big smile and he's giggling at the rain outside the window and you feel joy, that's mental health.
56:03
SPEAKER_01: If you didn't, I would worry about you.
56:06
SPEAKER_01: Right.
56:07
SPEAKER_01: So it goes both ways.
56:08
SPEAKER_01: The second part, which is, I think, the part that we're addressing right now, is the other side of mental health, is that we have coping, healthy coping strategies to help us move from the more hard, complicated, uncomfortable emotions to the more pleasant emotions that we know how to move from one to another, that we don't get stuck in either or.
56:32
SPEAKER_01: Right?
56:33
SPEAKER_01: So of course you're feeling scared, disappointed, sad.
56:36
SPEAKER_01: I mean, of course, it would be weird if you didn't.
56:40
SPEAKER_00: Absolutely.
56:41
SPEAKER_00: And as you said, there are so many positive coping mechanisms.
56:47
SPEAKER_00: And for people, I've been, I've been fortunate that I've been able to lean on those.
56:52
SPEAKER_00: I have friends who have fallen into very negative coping mechanisms.
56:57
SPEAKER_00: And for anyone who finds themselves, you know, drinking too much substances, negativity, overeating, like whatever the negative coping mechanism is, do your best to not shame yourself if that is the loop that you have fallen into.
57:19
SPEAKER_00: And do not be ashamed of the fact that that's where it has happened.
57:22
SPEAKER_00: And know that there are people who are very well trained and helping to pull you out of that loop and make you feel better than you did even before you needed those mechanisms.
57:36
SPEAKER_01: Yeah, I mean, sometimes that's all we know.
57:40
SPEAKER_01: Right.
57:40
SPEAKER_01: And it's not healthy functioning, but it's clever.
57:44
SPEAKER_01: If I don't, if I'm having all these big feelings and I don't know how to sit with them or I don't know how to move them, it's pretty clever to reach for a bottle of booze or to reach for my phone or to over-exercise or to over.
57:59
SPEAKER_01: It's sort of clever, but there are other ways that are more healthy that aren't going to have the repercussions that those things have, right?
58:07
SPEAKER_00: Absolutely.
58:09
SPEAKER_00: And early on in my journey, um, I was sitting with a therapist and everyone to go to therapy who's considering it because it's wonderful.
58:19
SPEAKER_00: And I was saying, my friends are saying, I'm they're worried about me and I should take a yoga class, but I don't want to take a yoga class because I would just go into the room and cry and watch these carefree bendy 20-somethings, and that sounds miserable.
58:33
SPEAKER_00: And the therapist said, Right now, your to-do list is your yoga.
58:39
SPEAKER_00: And that totally reframed self-care for me when I need when I feel like everything is out of control.
58:49
SPEAKER_00: I make a list of things and I'm like, okay, I'm gonna get that re insurance reimbursement.
58:55
SPEAKER_00: I'm gonna follow up on the school therapy plan that's not being enacted.
59:00
SPEAKER_00: I'm gonna like do a thing because that gives me some sense of agency and control because there is so much we cannot control.
59:10
SPEAKER_00: And once we are honest about all the things we cannot control, it can feel good and productive to have control over these things because then we feel like we are serving ourselves and our children and our family, and that gives us the space to, you know what, take 20 yoga classes if you want, walk around the block, whatever that healthy thing is, it gives you the space to find that healthy place.
59:38
SPEAKER_00: And so many of us in extreme parenting situations don't have the space to even want to do those things.
59:48
SPEAKER_00: And sometimes figuring out all the super boring, rotten paperwork stuff is what you need to do to give you the space to want these other things for yourself.
59:59
SPEAKER_01: I love that so much because in a world where there's so much that's not in your control, that's not in our control, and we feel like we have no agency, we feel anxious there.
1:00:13
SPEAKER_01: And when we can bring our focus back to the things that are are in our control, which is the choices we choose to engage with or the actions we're taking, we feel better, whether that's a yoga class or your darn to-do list, right?
1:00:30
SPEAKER_01: Kelly, as we wrap up, I wanna um I wanna come back to this idea of the universality.
1:00:40
SPEAKER_01: I don't know if that's a true word, but that's the word that I wanted to use.
1:00:43
SPEAKER_01: Okay, good, of what it's like for a family where there's a child with any type of disability or anything, you know, and the mom in the role of mother of that family and mothers that would not necessarily hear themselves in this life journey that you've been on.
1:01:10
SPEAKER_01: I want to bring us back where we can actually wrap it all together.
1:01:14
SPEAKER_01: And really, Kelly, what we're all looking for is a feeling.
1:01:18
SPEAKER_01: All we want is a feeling in life, right?
1:01:21
SPEAKER_01: We're like, I want, I say, I'm gonna buy that sweater.
1:01:24
SPEAKER_01: It's not that I want the sweater, it's that I want the feeling that I believe that sweater is gonna give me when I wear it.
1:01:32
SPEAKER_01: Right?
1:01:33
SPEAKER_01: It's not the vacation I want, it's the feeling I believe that I'm gonna have when I take that vacation.
1:01:40
SPEAKER_01: So, what we're all looking for is a feeling.
1:01:43
SPEAKER_01: And what I think we're all looking for when we become parents is a feeling.
1:01:50
SPEAKER_01: What does this family feel like?
1:01:52
SPEAKER_01: What am I gonna feel like when I become a mother?
1:01:57
SPEAKER_01: And the mistake we make, as we started with, is the assumption that things need to look or be a certain way in order for us to access that feeling.
1:02:06
SPEAKER_01: And you, Kelly Coleman, have turned that on its head for us today.
1:02:12
SPEAKER_01: So I would love to wrap up with you telling us what it feels like to be a part of your family.
1:02:22
SPEAKER_01: What it feels like to be a mom.
1:02:28
SPEAKER_00: What it feels like to be a part of our family is the chaos and the beauty and it feels like everything.
1:02:45
SPEAKER_00: You know, every everything all at the same time.
1:02:50
SPEAKER_00: I think so many families who are not walking this path or who aren't yet walking this path and don't know that they will be walking it soon, um, we can all we can all not only be curious about one another, but we can recognize, especially in looking at these extreme parenting and caregiving um instances in families like ours, rather than saying, I could never do what you do, you would do what I have to do, what I do, because you would have to, you would not have a choice.
1:03:29
SPEAKER_00: Um we are all doing what our children need, what our families need, and what we need, and embracing the mess of it.
1:03:45
SPEAKER_00: And as we are looking at what is universal, we can look at there will be mess always and often and in unpredictable ways in all of our lives, parents or not.
1:04:01
SPEAKER_00: But looking at how others around us embrace all of the mess, we can start to see ways that we can lean into the messiness and embracing that.
1:04:16
SPEAKER_00: It doesn't mean we have to be excited about it, doesn't mean we have to be falsely positive about it, but all the things.
1:04:25
SPEAKER_00: And so being part of our family, it feels like all the things.
1:04:30
SPEAKER_01: Oh man, what a beautiful place for us to wrap up.
1:04:36
SPEAKER_01: You have said a number of words and given us a number of examples of what I imagine it must feel like in your family.
1:04:47
SPEAKER_01: And I'm if it's okay with you, I want to reflect back what I've heard you say.
1:04:52
SPEAKER_02: Yes.
1:04:54
SPEAKER_01: That being in your family, Kelly, is about immense amounts of curiosity, love, connection, joy, humor, confidence, and capability.
1:05:13
SPEAKER_01: And isn't that what we all want when we consider becoming parents?
1:05:18
SPEAKER_01: A life where our family embodies those things and how amazing it is.
1:05:27
SPEAKER_01: What a gift it is, Kelly, for us today to be reminded that those things are there for us, regardless of what the situations or or how our family looks or the dying, you know, the certain situations that are a part of that family system don't determine whether or not we have access to what we want most.
1:05:56
SPEAKER_01: It's the most important reminder.
1:06:00
SPEAKER_01: For us.
1:06:01
SPEAKER_01: So thank you for showing us what that can look like.
1:06:05
SPEAKER_01: What that looks like.
1:06:07
SPEAKER_01: It's um we all need that as a reminder.
1:06:11
SPEAKER_00: So thank you.
1:06:12
SPEAKER_00: Thank you.
1:06:13
SPEAKER_00: And even in the hard, as you said, we can access, maybe not in the immediate moment, but we can access all of those things.
1:06:24
SPEAKER_00: We all get to experience all of those things.
1:06:28
SPEAKER_00: You do not have to deserve them.
1:06:30
SPEAKER_00: You are here, and so you deserve them.
1:06:34
SPEAKER_01: Kelly, thank you for being with us today.
1:06:38
SPEAKER_01: Before we stop recording, and we'll have all of this in the show notes.
1:06:43
SPEAKER_01: Where can people find you?
1:06:46
SPEAKER_01: Where can they learn more about you?
1:06:48
SPEAKER_01: Where can they find you?
1:06:50
SPEAKER_00: So my website is the easiest place to find me, kellycoleman.com, and that's k-e-l-l-e-y Coleman.com.
1:06:59
SPEAKER_00: And my book, Everything No One Tells You About Parenting a Disabled Child, I'm gonna cry again.
1:07:05
SPEAKER_00: Everything tells you everything no one tells you about parenting a disabled child.
1:07:09
SPEAKER_00: Your guide to the essential systems, services, and supports is uh available at all the book places.
1:07:16
SPEAKER_00: And um I really look forward to sharing this journey with your audience in your community.
1:07:23
SPEAKER_01: Kelly, my mama heart feels your mama heart.
1:07:26
SPEAKER_00: You know.
1:07:27
SPEAKER_01: Yeah.
1:07:28
SPEAKER_01: Thanks for being here with us today.
1:07:30
unknown: Thank you.
1:07:32
SPEAKER_01: Hey listeners, we sure hope you enjoyed that episode.
1:07:36
SPEAKER_01: And if you did, we would really love for you to share this with a friend.
1:07:42
SPEAKER_01: So here's the deal: we're all in this together.
1:07:45
SPEAKER_01: And as a community of moms, we need to make sure that no one is left alone.
1:07:51
SPEAKER_01: So you can help us with that.
1:07:54
SPEAKER_01: Please share this episode or other episodes that you found useful for you.
1:07:59
SPEAKER_01: Please consider writing a review and rating this podcast because when you do, it actually makes it more accessible to other moms who might be looking for podcasts that they would also find useful.
1:08:10
SPEAKER_01: So we are so grateful you're here.
1:08:13
SPEAKER_01: And if you were interested in just taking a minute or two to share and rate and review, Dev and I would be so grateful.
1:08:22
SPEAKER_01: Thank you for mothering with us.