What happens when your life course is turned upside down? When everything you thought you understood about your present and your future is irrevocably altered?
Joanne Goughan, a resilient working mother of five, shares her journey of unexpected motherhood and the challenges and beauty of raising a child with Down Syndrome in a raw and inspiring conversation about prioritizing what truly matters.
None of us have any guarantees of what the future is going to hold for them or with them. We sign up to become parents, we roll the dice of what life is going to throw at us. - Joanne Goughan
When Joanne Goughan found out she was expecting her fifth child at 41, she never imagined the emotional rollercoaster that was about to unfold. As she welcomed baby Charlie into the world, she was blindsided by the news that her little girl had Down Syndrome. Struggling to come to terms with this new reality, Joanne experienced deep grief and a sense of loss for the life she had anticipated. However, she began to see the incredible strength and love that her daughter brought into their lives, and slowly embraced her new role as a mother to a child with special needs. Joanne's story is a powerful reminder that sometimes life's most challenging moments can lead to our greatest growth and understanding.
In this episode, you'll learn:
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Jessica Fein: Welcome. I'm Fein, and this is the I Don’t Know How You Do It podcast where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey, and I hope you enjoy the conversation.
Welcome back to the show. My guest today, Joanne Goughan, has a big job and a big family. She had four kids, thought she was done, and then a surprise pregnancy turned her and her husband's life upside down. Everything about their world changed when their fifth child, Charlie, was born. I'm gonna let her tell you the rest.
So without further ado, here's Joanne.[00:01:00]
Joanne Goughan: Thank you. I am so happy to be here.
Jessica Fein: I'm so happy to have you. We met in such a funny, weird way and you're the only person I met this way, and that is we shared a babysitter. And it was funny because for so many years I had heard about you and heard about your incredible family. And I was interested, but I was also a little bit resentful because of course, anytime we couldn't get the babysitter, it was because she was with you.
And so I'm like, who is this Joanne character?
I don't think I like her. You know? And then I met you and I was like, oh, I actually really [00:02:00] do like her. She's amazing.
Joanne Goughan: Well, it's funny because it was kind of mutual because you were her Saturday gig and so you had her on Saturdays and it was always, I can't on Saturday because I'm with Jessica.
Jessica Fein: Totally. It's funny because you know, we talk on the show about what are the things that have allowed you to thrive, succeed, keep your head above water, whatever, in really unusual circumstances. And I will tell you that that Saturday night date that we did for years was one of the keys to our survival.
So I'm glad we got the babysitter for that one. Okay, let's jump right in. You have a mega job at Beautycounter with 500 people reporting to you, and you have a massive job on the home front, caring for five kids. So let's start off talking about the home front and talking about those five kids because you had four and you thought you were done, and then along came Charlie.
Joanne Goughan: I wanna back up just a second and then we'll go there. When you had asked me to record this podcast and I have been seeing who you have [00:03:00] interviewed and the stories and the people that you've had on this podcast, I really had this moment of, okay, but I don't compare. I don't have a story like they have and I'm not as significant and have done as amazing things.
And so I kind of got in my head, but then I really stopped myself and I said, you know what? We all, every single one of us have a story. And we all have a story that we deserve to tell with the hope that it will inspire or impact somebody else. And so I had to kind of get real with myself and say, you know what?
This isn't about a comparison, and it's not about her life is more meaningful and mine isn't. Or her challenges have been more challenging and mine haven't. It's not a comparison. I wanted to start with that because I was a little nervous this morning.
Jessica Fein: Oh my goodness. You know what, Joanne? I'm so glad you said that because first of all, of course, you're right.
It is about being able to have our own individual stories and share those, right? I mean, that's where the connection and maybe some learning or inspiration comes, but it is so not a [00:04:00] comparison, and I think that that's something that's really hard for us on both ends of the scale, if you will. And what I mean by that is I think at the success level, we look at other people and we're like, they're so much more successful than I am.
Why aren't I that successful? Why is it happening faster for them? Why do they have it easy? You know, all that kind of stuff. And then I think on the other end of the spectrum, when we're going through tough stuff, we sometimes check ourselves and we say, well, I don't have it as bad as that person, so maybe I shouldn't open my mouth.
It's like both ends. We're constantly comparing instead of saying, this is my life, this is my reality. It may seem less than, more than whatever, but who cares? It's about me and my story for each one of us.
Joanne Goughan: Right. And also it has come into play with me and my life, and this kind of brings us back to Charlie in not comparing the journey I'm on now to the journey I expected to, or quote unquote wanted to have in my life with my family.
Jessica Fein: that's so interesting, and I imagine it's also comparing your life with Charlie. And again, [00:05:00] our listeners are probably like, tell us about Charlie. But comparing, I imagine your life and what it's like to Mother Charlie with what it was like to mother the other four kids. Right. So we're just really good at comparing ourselves to everybody, even ourselves.
We gotta cut ourselves some slack, that's for sure. We do.
Joanne Goughan: We absolutely do. Especially as women. So, all right, so Charlie, so backtrack. It was 10 years ago, and. I had thrown my back out. I had been taking some medication for that and I had this moment laying in bed one day thinking, Hmm, I haven't had my period.
I'm 41. Could I be going through early menopause? And I texted my mom and she's like, no. She's like, you're 41. And I'm like, I know, but like, this is weird. And then she said, are you pregnant? And I was like, oh God, no. Cuz my kids were 13, 11, 9, and seven. And we were like, in that next stage, we had [00:06:00] teenagers, pre-teens independent, that could take a shower by themselves.
Our 13 year old could babysit and we could go out for a Saturday night and we didn't need Kim. We were transitioning slowly into that next stage, and then I thought, Am I pregnant? I could be. And fast forward the next day, took a pregnancy test and found out we were pregnant and really caught us off guard.
Nine months of coming to grips with having a fifth child at a later stage in life and realizing, okay, I'm gonna be 42 soon to turn 43 when this baby is born. You know, you start doing all the math. Okay. Olivia will be 14 when the baby's born. When the baby's 16, Olivia will be 30.
Jessica Fein: how old will I be when my kid graduates from high school…from college?
Joanne Goughan: And then Charlie was born and I think probably three hours after she was born, we were told that Charlie had Down Syndrome. And that in the moment completely devastated me and turned my life upside down. And it's been for the past nine years, quite a journey. Quite a journey.
Jessica Fein: So take us back [00:07:00] to that learning, that hearing that Charlie had Down Syndrome, because throughout your whole pregnancy you didn't know that something was unusual or gonna be different.
So what was it like?
Joanne Goughan: No, I didn't, you know, but it's interesting in retrospect, looking back, you know, we found out we were pregnant. We told the kids, Olivia, in her, I don't know, whatever science class that year, they had to do a research project on genetic disorders, and she chose Down Syndrome. And she had this trifold, I still have a copy of it.
And she came to me a couple of times during that project and kept saying, mom, statistically, women over 40 have children with Down Syndrome. Mom this, mom that. And I kept saying to her, Olivia, you have four healthy children. Everything's okay. It's gonna be fine. This baby does not have Down Syndrome. I Specifically remember saying this to her a couple of times and then every once in a while during the pregnancy, you know, because we didn't do any of the, the testing we hadn't with any of our kids throughout the pregnancy A couple of times I had these moments and it was the only thing I thought about.
What if he or [00:08:00] she has Down Syndrome? I didn't think about Cerebral Palsy. I didn't think about any other disability, it was Down Syndrome a couple of times. I didn't think about these things until after the fact in the diagnosis. You know, kind of looking back at some of those signs along the way and it just like gave me chills.
I'll never forget the doctor after we had Charlie, we stayed in the delivery room for quite a while, bonding with her. Never once thought anything was different. Kept rubbing her on her forehead in between her eyes. Not consciously, but just kept rubbing that spot, which is one of the signs of Down Syndrome is kind of that flat nose thing.
So got up to the room and we're getting settled and in comes my OB, Dr. Hardiman and Dr. Sanchez, the head pediatrician of the hospital, and I'm like, aren't we the bomb? Like we are the best patients in the hospital. Dr. Hardiman loves me. She’s here. She's brought the head pediatrician.
Jessica Fein: No, it's never a good sign When the head doctor comes to your room, never. [00:09:00]
Joanne Goughan: Not at one point have I thought, what's wrong? Because Dr. Hardiman has delivered three of my babies now at this point. And so not once have I thought, ah, Dr. Hardiman usually doesn't come check on me until like the next day. Not once does this cross my mind, cuz I was just in that euphoria of having a new baby.
And I sat down and she built this amazing connection with us, Dr. Sanchez, and just asking us about the other kids. And then, you know, she said those words, we believe Charlie has Down Syndrome. And just that sinking feeling in your gut. Of just the worst possible things that your head goes to. I was grateful for her because in that moment I did say to her, you said you think so?
She could possibly not, and she did us one of the biggest favors and she said, we will do the blood test and the genetic testing. But she looked at us and she said, Charlie does have Down Syndrome and it was hard to hear, and I'm sure it was hard for her to say, but there was no going home and wondering where, I've heard some parents have gone through that.
Does she, does she not? Could it, could it not be [00:10:00] that she told us she has Down Syndrome and so we were able to start to go through that process of accepting it. I'll never forget laying in bed that night, waking up at like three in the morning. And I had had put her in the nursery because I needed some sleep and I was scared to death that she was gonna stop breathing or cuz I just didn't know anything about Down Syndrome.
And Dr. Sanchez in the moment had said to us when she shared, and this was another gift she gave us, was she said, you know, we will put you in touch with the Down Syndrome clinics in Boston and we'll put you in touch with the right people to learn. And she said, but what I want you to know is that. My experience with Down Syndrome is that people with Down Syndrome experience the world in a different way, where they see the good and almost don't see all of the bad.
And it kind of painted this really beautiful picture for us of what Charlie's life would be like. And I owe that to our geneticist, Dr. Skotko, because he had just done an in-service at Mount Auburn and had really talked to them and the staff there about how to deliver the diagnosis of Down Syndrome.
And then it's not [00:11:00] this horrid, I'm so sorry. Here's the bleak look of what this child's life is going to be like and yours is gonna be like, it was more of. Here's a gift that you've been given. And it's not going to be the same journey as you had with the other kids. And it's gonna be hard, but it's not gonna be horrid and horrible.
And I'm grateful for that because the journey has been challenging, but it's also been beautiful.
Jessica Fein: It is such a gift in the way that they delivered it, and I imagine that it's different because with Down Syndrome, of course, it's something everybody's heard of. And as you know, in my case, and a lot of people we talk to, they get a diagnosis of something that is words that the doctors hardly even know what they mean. In this case there are so many preconceptions and I wonder if even when you went back and thought about when you had said to yourself, what if my baby is born with Down Syndrome? When you had those imaginings, what was the answer? What was the what if? What did you say to yourself before and then [00:12:00] fast forward, how was that so different?
Joanne Goughan: I don't know that I ever let myself go to that place of imagining when I was pregnant. I think I shut it down pretty quickly. And part of that was my experience of not being around a lot of people growing up and even as a young adult and adult with people with different special needs and disabilities, they weren't necessarily in the sphere of my life on the day-to-day basis.
So I didn't have a comfort level around people with a disability. So I don't think I ever let myself go to that place. There's a lot that goes on in the Down Syndrome community around inclusion and how important it is that our kids are included in the day-to-day lives of their peers, so that their peers grow up with people who have different needs than they do.
There's terms like more alike than different, and the lucky few that have children with Down Syndrome. But I think about that and knowing Charlie now knowing. Other people who have Down Syndrome. Also, having my life being expanded by having more [00:13:00] people who are on the spectrum and autistic, or lots of different disabilities, how my life has become so much fuller.
I see things so differently as a result of that. And there isn't that shying away and being uncomfortable or being nervous that I'm gonna do or say the wrong thing because people do and say the wrong thing with me all the time with Charlie. But I know it's not out of malice. It's out of not knowing.
It's out of not being educated or understanding. And so there's that grace that's given.
Jessica Fein: I can so relate to so much of what you just said. I too did not have experience and I had fear. And the thing with us, because we adopted all of our children, when you adopt, there's like sheaths of papers full of questionnaires of what you quote unquote are signing up for.
In other words, there is a lot of questioning about would you be comfortable with the child with this, with that, with the other thing. And I was like, Nope, nope, nope, nope. Because I'm thinking I'm not signing up for anything like that. And you know, it is interesting because of course when you've adopted [00:14:00] people assume you did sign up for it.
And I thought that would be so terrifying, so scary, so different from what I had envisioned. And then look where we are, right? Because there's no certainty, no matter what way you become parents.
Joanne Goughan: I had some hard conversations with people in the beginning and they questioned the fact that we didn't do testing and how come you didn't do testing and how come you didn't find out?
And they're questioning of bringing a child into the world that has a disability. And I really came to terms with, and I, this was on the ride home. This is the first time it hit me. Leaving the hospital with Charlie. In my head I was thinking she'll never get married. She'll never have children, she'll never this, she'll never that.
Like these are all the things. And then I had this moment and my oldest was riding horses at the time, and I said, Olivia could get tossed off that horse tomorrow and never walk again. Zoe could biologically never be able to have children. None of us, when we become parents through adoption, through biologically having these children, [00:15:00] none of us have any guarantees of what the future is gonna hold for them or with them.
We've signed up to become parents. We rolled the dice of what life is gonna throw at us. I don't know. It may really made me stop and think and we had plenty of challenges with the other kids and they're quote unquote neuro-typical, and you know, sometimes I laugh. I don't know if that's harder or Charlie's harder.
Jessica Fein: Right. That's so interesting. And also kudos to you that that early on you were able to do that mind shift. I wouldn't be surprised, I suppose, if that happened over time, but to have an on the hospital ride home, that's amazing. And so you had to adjust those dreams and plans, right? When you first even found out you were pregnant and you were gonna have a baby and you're doing the math in your head, you had to do all of those adjustments and then you had to do the adjustments a second time.
And it sounds like from what you're saying, you were able to do that relatively quickly.
Joanne Goughan: I have not lost somebody that is significant in my life yet, and so I haven't been through that type of a grieving process. But what I have [00:16:00] been told to me is, is that having a child that has a diagnosis like this, that you do go through a similar grieving process, and there were definitely stages, and I would say that it probably was the first six months of her life that were really the most significant that I went through that. And I still, I mean, I still go through periods of sadness that like, this is her journey and she has a lot of really challenging behaviors and, you know, and I sit there and I'm like, oh, why me? And, and so forth.
And, and then I sit and think, you know, she didn't ask for this. She didn't ask for her brain to work this way. She didn't ask for this diagnosis. Like, she's also doing the best that she can. But those first six months of her life, There was a tremendous amount of grief, a tremendous amount of having to accept, and it came in waves.
I would sit there and I would just sob holding her, but look into her eyes and she had this way of like her eyes, the way she looked into me. It was like she could touch my soul as like a [00:17:00] newborn, the way she just saw me and it was like, you get me. It was beautiful, terrifying. But I also would sit there and I would say like, how did you find me?
That was the thing that I kept saying over and over again. I do believe I have a strong faith that it's not our path, that it's the path that God has for us and our lives, and that there are no mistakes and no coincidences, and that she truly was put in my place for a very specific purpose in my journey and my growth.
And I think too, that I became her mother for a very specific purpose.
Jessica Fein: I am grateful that you acknowledge that there is grief associated with this kind of thing, because I think that that's not something that everybody understands when they're going through it, that yes, this is grief. It can feel like, how can I be grieving?
My person's still alive. I felt that way. It wasn't until I actually learned more about grief in general, about ambiguous grief and about all the nuances and the [00:18:00] different kinds of grief and what I call non hallmark card kinds of grief, right? The kinds of grief we experienced that you can't just go buy a card for.
You have to grieve what you expected your life was going to be. And to be able to acknowledge that and to know that it's a very common expected thing. I know I felt relieved when I learned that these feelings are okay. They have a name. Then it felt like I could coexist with the feelings in a different way.
Joanne Goughan: Somebody gave me the poem, Welcome to Holland, you're going to Italy, you're packed, you've got the guidebooks, you are ready to go, and you get on the plane and all of a sudden you land and the flight attendant says, welcome to Holland. And you're like, wait, this is not what I signed up for. Like I signed up for Italy.
I'm not prepared for Holland. I don't have the right clothes, I don't have the right whatever. And it's like, well, nope, but you're gonna stay in Holland. And back to that comparison that well look at all my friends over there in Italy having a blast. You know, we are in this stage of look at all of these people whose kids are our older [00:19:00] kids ages who are in that next stage of life.
I mean, we're going to one of their houses next weekend for dinner as a bunch of us couples. And I'm like, yep. Just need to make sure I can get a babysitter.
Jessica Fein: No babysitters in Italy, they are past the babysitter stage in Italy.
Joanne Goughan: And so, you know, here we are in Holland and we're trying to find the beauty in Holland and see the tulips and the windmills and that beauty.
Jessica Fein: It is such a brilliant, brilliant poem. It's like, you know what? The food might not be as good, but they're gonna be other things that we never even anticipated that they sure don't have in Italy. So now you come home, you've got child number five. You have to learn like we said, a new language, a new what to wear, what to do, how to talk to people.
You have to find a new level of grace within yourself. You need to open yourself up to the new possibilities. You're going through this grief and you’ve got a huge job. How in the world do you balance it all?
Joanne Goughan: It’s interesting because I actually was with another company when Charlie was first born, and when Charlie was a year old, I made the decision to [00:20:00] pivot and to join a new company because Joanne doesn't do anything easy on herself and the industry I'm in for independent consultants we're entrepreneurs.
And so it was taking a pivot, walking away from a six figure income and a large team to join a different company and start from ground zero, and we were all being like, okay, Charlie's one. We've got four other kids, like, what are you thinking? And it was kind of one of those moments of, I'll regret it if I don't do this.
It was an overwhelming time of just putting one foot in front of the other and having days where I really blew things up and days that I did be things beautifully. So, and I don't even remember your question.
Jessica Fein: That’s what it's like, right? That's, that's just what every day is like. Like I don't even remember what it was we were talking about.
So with the career and the five kids, Which under absolutely quote unquote conventional circumstances would be challenging. And then in a situation that is not by any means conventional, how in [00:21:00] the world do you balance it? How do you get through the day?
Joanne Goughan: You don't, that's the one thing I think for a long time I tried to strive to have balance, and I don't think that we ever really, truly can have perfect balance in our lives.
I laugh, I'm like, I don't know how I do it. Most days I wake up and, and I'm like, okay, the 24 hours ahead, you know, what are they gonna look like?
Jessica Fein: Sometimes it's just like the hour ahead. What is that gonna look like?
Joanne Goughan: Right. Yep. I think that one of the things, and I think this has been something that I learned really when I was a teenager, and it's kind of the journey in my life, is really looking at not having regrets.
And really going after and pursuing the things that really light my heart on fire and not letting circumstances life be the excuse for not doing those things. I am fortunate that my husband has a great income and that we. Could make it work on just his [00:22:00] income. And I could have used having four kids having one with special needs, now having five kids kind of be that excuse of why I couldn't continue to build my career and build my income and do different things.
But instead, I really looked at it and said, how am I gonna be the best version of myself that I can be? And looking at what the things are that filled my cup up. And then figuring out how to make those things happen, and it looks really, really messy. A lot of days really messy, but it also looks really beautiful.
I love Glennon Doyle. What is it? Brutiful?
Jessica Fein: Glennon Doyle. Yes.
Joanne Goughan: Beautiful and brutal.
Jessica Fein: Beautiful and brutal. Fabulously chaotic. That's how I described it.
Joanne Goughan: This is what we do. We create chaos. And then we figure out how to have fun in it or how to get through it, you know?
Jessica Fein: Totally. I remember when people, you'd be like, Hey, how's it going?
And somebody'd be like, oh, same old, same old. And I'd be like, what would that be? Like, what does that even mean? Or you know, Hey, what's [00:23:00] up? Oh, nothing much. Really nothing. Nothing's up. Like I can't imagine what that life looks like.
Joanne Goughan: Yep. And with it too, there are a lot of days where I feel like I am dropping the ball, I'm letting people down.
I'm not doing all that I possibly can for Charlie, that I'm not advocating enough, I'm not learning enough. There are those days where I'm like, ha ha. Like I don't know how like, and the thing that I've really done is I've leaned on resources. On other people have not tried to be the expert at everything, but instead, lean on those who have those expertises and get help.
I'm not somebody who easily asks for help. At all, unless it's my husband.
Jessica Fein: How did you get to be more comfortable with asking?
Joanne Goughan: I don’t know that I fully am because oftentimes I am quietly suffering and somebody will say like, just ask. Just ask. I'll help. I think part of it is realizing I can't be everything to everyone and do everything, because when I try to do that, typically [00:24:00] everything falls apart.
Starting with me when I'm trying to do it all and handle it all, and I'm not asking for help. I'll physically hit a wall or mentally hit a wall and emotionally hit a wall, and I'll end up in bed on the couch for like a day or two and it'll be me saying, I just, I don't feel good. I need to check out. I need you to step in.
And it's hysterical because now my 19 year old would be like, oh. Is it that time? I'm like, what do you mean? She goes, is that time that like, you just need to check out? Are you sick?
Jessica Fein: Okay. Those were the air quotes for people listening. Sick was an air quotes.
Joanne Goughan: And I got upset and offended at first, but then I started thinking about it and I was like, you know what?
I'm not physically sick. What it is, is I have not asked for help. I have not outsourced, I have not said no to enough things, and so I've hit my limit and now I am in bed saying I can't take anymore. We can laugh about it, but it was her holding that mirror up to me and kind of poking funny a little bit, but also me realizing I [00:25:00] get myself into that place by not asking for help
Jessica Fein: and saying, no, that's one that I'm working on too.
Joanne Goughan: That's hard.
Jessica Fein: It’s really hard. I was actually listening to another podcast to Smartless, and I think it was Jason Bateman or something, was saying if the thing he's been asked to do is something that he wouldn't wanna do right away, like if he's asked to do something, but it's not gonna be for a couple months, the gut check is, would you wanna do this if it was tomorrow?
And if the answer is no, say no now. Because I know that I sometimes will be like, oh sure, sure. Cuz you know it's months away or it's a week away or whatever, and then the time comes. I'm like, what was this? Why didn't, what was I thinking?
Joanne Goughan: I heard a podcast yesterday that I was listening to and they were telling a story of Richard Branson and there was a company who wanted to hire Richard Branson to come to speak.
And they were gonna give him like $250,000 to come and fly them in on their private jet. He said no. So then they upped it to 500 and then to a million and he kept saying no. And they said, well, what about next year? Maybe it's the time of year. And Richard Branson's assistant finally said, look, [00:26:00] Richard has Mr. Branson, whatever his name is, like you know Sir Richard has three goals, three things he focuses on in a year, and the only thing he says yes to, Are the things that are in the priority of, or moving towards those three focuses He has for a year, and I think it was more like his three goals, but I took that as like, okay, what is my focus for this year?
Is it family? Is it my health? Is it my business? Everything we say yes to, we're saying no to something else. It's okay. What are my priorities right now? And am I saying yes to the right things that are my priorities right now?
Jessica Fein: That's even better than the what I wanna do a tomorrow test. It makes us be more deliberate about what do we wanna be focusing on? Right? Even pausing to think about what would those three areas of focus or those three goals be. Yep. So which do you think is harder running the business? Or running family with five?
Joanne Goughan: Depends on the day. Depends on the day, depends [00:27:00] on how the kids are behaving, how the employees are behaving, crisis, how the business is going.
You know, it's been a challenging time in our business and so that has been hard. So I think it really depends on the day. You know, really, I don't think I could say one is harder than the other.
Jessica Fein: Does parenting in general and parenting Charlie specifically help you in your business?
Joanne Goughan: Oh, absolutely. Cuz I'm in a people business.
I'm in a people business and I'm in a business that's about relationships and connecting and kind of seeing past what people say to really understand what their heart is. And I think that raising kids, And slowing down enough to really not just hear the words they're saying, but seeing beyond the words to really understand.
It's absolutely helped. Absolutely. And I think too that a lot of my business, there's a lot of focus on personal growth and learning and growing as an individual, and that's helped [00:28:00] me raising kids. I mean, when I started in this industry 19 years ago, I had four, three and one year olds.
Jessica Fein: You talked about slowing down, and I know that you have something you call Charlie time, so I'm wondering if you can tell us what Charlie time is.
Joanne Goughan: Yesterday morning I was not organized. I stayed in bed longer than I should have. I didn't get her out of her room early enough and we got downstairs and I started in that frenetic like, oh my God, oh my God. Oh my, I gotta make her lunch, and she's gotta sit and eat, but she's not sitting and eating and she's playing with the dogs.
No, Charlie. And then I had this moment of like, Joanne, don't rush her. Because if you rush her, she is going to shut down and she's gonna sit on the floor and you're never gonna make that bus in 20 minutes. Nevermind having her fed and dressed and on that bus in 20 minutes. And so it made me start thinking, I recently had to run errands with her.
It was on Marathon Monday. I had to run errands and I had to take her with him because I didn't have anybody else. And I dreaded it until I had this moment of, if I just [00:29:00] take this at her pace. And I don't rush through the errands, and I just let them take as long as they can. Instead of having an agenda of like, okay, I gotta get this, this, this, this, and this, done.
It's like, no, I've got these three errands we need to run. I'm gonna let it take her seven minutes to get out of the car once we get there, instead of come, come on, come on, come, come on. Yes, and let it take time. Follow her lead on the day. And I had the time that day to be able to do that. And that was the day that I kind of coined.
I said to my girlfriend, cuz she said, how was it, you know, running errands with Charlie? And I said, it actually was a really magical, beautiful day. And it was pouring buckets and it wasn’t fun. I mean, it was the bank, it was taxes, it was stuff like that. She said, okay, why? What made it so fabulous? And I said, because I was on Charlie time.
And then I've kind of adopted that to when I am prepared, when I'm thoughtful, when I take things, even not with her, but in my own day, I'm purposeful in [00:30:00] my time. They end up being better days, they end up seeing so much more magical.
Jessica Fein: Okay, so we're all gonna try Charlie time. Yes. I love that.
Joanne Goughan: We go to speech therapy in Wellesley and there was a period of time where I'd need to kill a little time and we would stop at Starbucks.
And next to Starbucks is an Orange theory and outside of Orange Theory, don't know if you've ever noticed, and I don't know if it's just this one, but there are all these little orange circles. Charlie would sit and she was maybe four or five, and she was learning how to count, and she'd sit there and we'd stand and she'd have to count every flipping circle.
She was learning to count, so it was 1, 2, 7, 10, oh, no, no, no. And then she'd go back and start again, and we'd start again. I remember sometimes being so frustrated, but then stopping and looking at it in awe and wonder and seeing it through her eyes, and that's one of the things that she's helped me do is to slow down.
To see things through her eyes instead of being in such a rush all the time. [00:31:00]
Jessica Fein: You talked about lessons from Charlie, and I know Charlie time is one of them seeing things through her eyes and maybe understanding that there's awe and wonder even in something so seemingly mundane as orange circles. What other lessons from Charlie do you live by now?
Joanne Goughan: There's so many. One thing that I really, truly, and I don't know if it's necessarily from her or just the experience of raising her, is having grace with people. Understanding that what you see and what your experience is, that there's always a story behind it. Part of that too is like when people meet Charlie, sometimes they'll talk to me, not her.
Because they don't know, will she understand? Can she talk, is she verbal? Is she not verbal? And it used to really irk me. I used to be like, freaking, why are you talking to me? Ask her. But then I started thinking, well, you know, what's their experience been? Have they met people with Down Syndrome before?
Have they not? Have they met somebody with Down Syndrome who's not verbal? You know, what's their experience been? And so instead, I'm trying to learn to be the [00:32:00] teacher instead of the judger. That's one thing. Perseverance. I have never met anybody who perseveres like that child without frustration just tries over and over and over again.
And that's been hard as a parent because I think even with my other kids, it was like, you know, how often are our kids doing something? You're like, it's taking too long. You jump in and do it. Tying the shoes, you know, buckling the seatbelt, things that come easily to other kids her age. Take her a lot longer to do because of her fine motor skills and so forth.
She doesn't give up. She doesn't get frustrated unless I step in, unless I try to hurry the process along. And then she will get frustrated. She'll get frustrated at me. I wanna do it. Or she leaves the other way and I start to notice she becomes too dependent upon me. And my goal isn't to have her to be dependent on me, it's to have her be independent.
That's another big one. Acceptance. She loves to meet people, but if she were to meet you for the first time, she would not be like hugging and kissing and loving you and connecting with you right away. [00:33:00] She's nervous and she's shy and she's hands up, but she also doesn't judge people, other kids in her class, like she just accepts them for who they are.
Their quirks and whatnot, and that's been a beautiful thing to see, and she accepts us. You know, and she calls us on our shit.
Jessica Fein: So my last question then is, do you think that the other kids have started to take some of these lessons from Charlie? The sibling relationship is so powerful when you have a child in the family who is different.
I know your kids are older and that they were in many ways formed when Charlie entered the family. How have they changed?
Joanne Goughan: I wanna cry with this one. My kids are amazing, amazing. With her from day one, they had the attitude of we will hold the bar high for her. We will help her to be the best that she can be.
We will teach her. We are never gonna say, oh, she can't do that cuz she has Down Syndrome. We're not letting her off the hook because people will say to me, oh, do they baby her? No. They don't. [00:34:00] My son will often say to me, mom, stop it. You keep giving into her. Stop giving into her. He has to remind me. They will all say she has changed them.
She has helped them be better people. They have had experiences in their life that they never would have partaken in because they have a little sister with Down Syndrome. My oldest volunteers with families who have Down Syndrome, kids with Down Syndrome runs programs for them down in Baltimore. My son goes to Ohio State.
He called me and he said that he had just spent a whole Saturday playing tennis. It was a program with tennis, with people with Down Syndrome. I don't know that they ever would have sought out those experiences if it weren't for having Charlie as a sister. My oldest used to say to me, and I would get offended, she'd say, Charlie saved our family.
I cracked up cuz I was like, I didn't know our family needed to be saved. What had we messed up so badly as parents, we needed to be saved? But I think that she meant it in a way of, it has brought our family closer. [00:35:00] She brings us together. She's changed them. She's changed us all.
Jessica Fein: Thank you so much for taking this time and for sharing your story and her story, and your family story with us.
It's been great talking to you.
Joanne Goughan: Thank you very much. Thanks for this chance. I feel honored to be a part of your podcast.
Jessica Fein: Oh thanks, Joanne. Okay. Here are my takeaways from my conversation with Joanne. Number one, every one of us has a worthwhile story to share. It's easy to compare ourselves to others, but there's a reason Teddy Roosevelt said, comparison is the thief of joy.
Number two, I love how Joanne said she really focuses on living in a way where she doesn't have regrets. She pursues the things that light her heart on fire and doesn't let the circumstances of her life hold her back.
Number three, nobody can be everything to everybody. Delegate. Ask for help outsource.
Number four, when we say yes to something, we're saying no to something else. So choose what you say yes to thoughtfully.
And number five, let's all try to live on Charlie time. When we're thoughtful and [00:36:00] purposeful in our time, the day will feel less chaotic and even maybe a bit magical.
If you're enjoying this show, please take a second and rate the show and give me a review.
The reason I say this at the end of each episode, or most episodes, is because doing that, leaving a review and rating the show is how more people get to hear it. So thank you in advance for doing that. Thank you for listening to the show. Have a great day. Talk to you next time.