Mahara Wayman [00:00:06]:
Welcome to the art of badassery where I explore what it takes to live life on your own terms. Break free from the status quo and unleash your inner badass. Art. Whether you're a rebel at heart or simply seeking inspiration to step outside your comfort zone, this podcast is for you. I'm your host, Mahara Wayman. And each week, I dive into the stories, insights, and strategies of those who've mastered the art of badassery and are living life to the fullest. They smile when no one is lucky. Art Welcome to another episode of The Art of Badassery.
Mahara Wayman [00:00:44]:
I am your host, Mahara Wayman. And today, I am so excited to introduce you to my guest, Sarah Deschamps. R Born and raised in Minnesota, Sarah's incredible journey has spanned multiple continents. Having pursued higher education at the prestigious Stanford University. Sarah's background is impressive. From teaching Spanish and navigating the intricate role of a school administrator to becoming a multimillion dollar fundraiser. She has worn many hats in academia and philanthropy. However, The real adventure began when Sarah and her Belgian husband with their 2 year old daughter decided to move to Tokyo, Japan while 8 months pregnant.
Mahara Wayman [00:01:24]:
Art Driven by a thirst for exploration and a desire to expose their children to diverse cultures, the couple eagerly embrace the challenges that lay ahead. R Little did they know, however, their journey would take an unexpected turn. Shortly after starting their new life in Japan, Sarah gave birth to a baby with multiple medical issues. Their relentless pursuit of saving their daughter's life all while immersing themselves in the beautiful complexities of the Japanese culture defined their next 7 years. Today, Sarah joins us to share her story of resilience, adventure and the profound lessons learned from navigating the highs and lows of life in a foreign land. R Get ready for a captivating conversation, everyone, that, in my opinion, encapsulates the true essence of badassery. Sarah, So excited to have you on the show. Welcome.
Sarah Deschamps [00:02:20]:
I'm absolutely thrilled to be here. Thank you so much for this wonderful invitation.
Mahara Wayman [00:02:24]:
Oh, r Anytime, girlfriend. What you don't know well, you only just know because I told you 5 minutes ago was that I've actually also lived in Japan. So I'm incredibly impressed that you were there for for 7 years. And I'd like to go back to what you were thinking taking a 2 year old, r Very much pregnant to a foreign land. Like, what was the driving force behind that?
Sarah Deschamps [00:02:50]:
So My goals in life in my younger self life was that I always wanted to pursue things that were different, unique that pushed me outside my comfort zone and gave me an opportunity to speak new languages, to meet new people. And so art. Whenever I had the opportunity to do that, I did. So in college, for example, I studied in Colombia. I studied in China. I studied in, Europe and gave myself as much time as I could away from Minnesota. Soda. Not that I don't love Minnesota, but I wanted to be able to go see new places.
Sarah Deschamps [00:03:31]:
And when I met my now husband, r when I was a freshman in college, he and I both instantly found a connection because we were interested, 1, in pursuing art New opportunities to see new cultures, but 2, we were excited about Japan. And so we had a friend in college who was from Tokyo, And we embraced him as a part of our life almost instantaneously, and he taught us Japanese words, and he Taught us life in Japan and what it was like. And so, ultimately, when Fred and I were married, we had the opportunity to travel to Japan because he worked for Northwest Airlines. And so the company took him to Asia many, many times. And he and I had the opportunity together to go on vacation. R So when we're first married, we went to Bali and we went to Thailand and we went to Singapore and again had opportunities to travel. R And when we'd had our 2 year old and I had been teaching Spanish and French for many years at a school, r We seize the opportunity through Northwest Airlines to move to Tokyo. I was 8 months pregnant at the time, art And we just decided we had the thrill and opportunity of a lifetime to have our children grow up in Japan, And we wanted to stay as long as we could.
Sarah Deschamps [00:05:00]:
This was going to be an amazing net next step that the 2 of us would have together.
Mahara Wayman [00:05:07]:
Wow. I wanna highlight that it is badass to open yourself to the world of travel. Art I think many of us in the Western society view traveling as it's a total bonus, like because it is expensive. Art. And, typically, we travel to vacation spots where we can lay, you know, drink and eat and lay in the sun. But what I heard from you was r Much deeper than that. It was a recognition that the world is an amazing place, and you wanna get a piece of it and understand it. So that's totally badass.
Mahara Wayman [00:05:41]:
So I'm high fiving you for that. I'm curious, though, when you finally moved to Japan, was there anything that struck you as outside of your daughter's illness, because we are gonna get to that. But was there anything about the Japanese culture where you looked at each other and went, r okay. That's a surprise. What?
Sarah Deschamps [00:06:03]:
I I think on a daily basis, art There was something like that. When we would open our front door every morning, art. Fred and I, my husband and I, would say to each other, what is the adventure that awaits? And it art Truly was like that. Inside our home, we were living as you would in the United States. We embraced as much of the culture as we could, but it was truly when we opened our front door, the excitement and the thrill of seeing a culture so different from our own. The clothes that people wore on the street, the restaurants that we experienced food at where there was nothing written in any English. Art. It was looking at a board on the wall that had a list of the foods.
Sarah Deschamps [00:06:59]:
We could see nothing. So we'd step outside art. And they always had plastic displays of the food, and so you could point. Art. And there was something magical about the opportunity, first, to see the beautiful displays of whatever the food was going to be art but made in plastic. And then to go and sit down and try our best to communicate with people r who didn't speak English, and we were learning Japanese as we first arrived. My favorite story is when I arrived in Tokyo, I knew one word. I I had been so so busy beforehand and we will talk about that piece later.
Sarah Deschamps [00:07:44]:
Art Before we left, and I desperately wanted to land in a place and be able to communicate. Art. However, upon arriving when we exited the immigration, I knew one word, which was. R And means thank you. And in the end, that was a pretty good word to have known, but it didn't get me far in a restaurant. Art. It didn't get me very far looking on a subway about which station we were going to, but it certainly was a wonderful entree into being able to thank people, which is an incredibly part of important part of the Japanese culture.
Mahara Wayman [00:08:24]:
Absolutely. It is. And I just wanna highlight you used the word magical a few times just now, And I think that that's a really important component of not only being badass, but being open to the magic of life. Because we're about to get into a conversation that showed you that sometimes the magic isn't enough, art Or the magic can be tempered with some reality. So can you talk to us about what your daughter was born with, r And how you navigated that in a foreign land and why you didn't hightail
Sarah Deschamps [00:09:03]:
it back to Minnesota. Yeah. So r When I was 5 months pregnant, we had made the decision at that point that we We're gonna take advantage of the opportunity to move to Tokyo. And so I went to see my doctor, and I I said to him how cited I was. I was moving to Japan. This was gonna be wonderful. He immediately said, are you r Crazy? What is wrong with you that you think this is a good idea to give birth in a foreign place? No one would do that. Art And in my way of being sure that I was correct in doing life the way I wanted to, I told him, but I I'm going.
Sarah Deschamps [00:09:47]:
And he said, well, okay. Let's do a 2nd ultrasound and let's find out what it how the baby is progressing because the baby was fine up till that point. The growth was fine. The baby was moving. The 1st ultrasound had been perfect. So r At that 2nd ultrasound when I'm 5 months pregnant, we found out that there may be something in the baby's lower abdomen that they called a dark shadow. Well, my husband and I looked at the ultrasound pictures from that ultrasound. R We had already decided we were moving to Japan, and we made the naive, I would use the word, decision that we were gonna move to Japan anyway.
Sarah Deschamps [00:10:38]:
He wasn't the doctor wasn't sure. R Maybe everything was okay. He the baby wasn't in a position that we could really tell, and so therefore, maybe everything was okay. R We knew there were good doctors in Japan. Fred had already been to Tokyo and found good doctors for us who spoke English and r Could could understand a foreign pregnancy, if you will, and so we felt like we were set. So I organized things art And and we got off to Japan thinking things were okay. Soon after we arrived, that doctor who's who we had decided would be the one who would see us said, I cannot see you. Art There is certainly something wrong with this baby.
Sarah Deschamps [00:11:25]:
And at that point, I'm 8 months pregnant. R No airplane, not even the one my husband was working for, would allow me to travel internationally because I might give birth on the 12 hour flight. And so we had made our decision, and we were gonna stick with it. So they sent us to what r It's called the level three trauma hospital far, far away from the apartment we were living in, and r We had only been in Tokyo a couple days at that point, so I had no idea where I was. We took a taxi. We handed them a piece of r The the taxi driver, a piece of paper that had the name of the hospital, hoping we were gonna land at r the hospital where our baby would be born. At that point, the hospital r Did every single kind of test they could do. They said, maybe something's wrong.
Sarah Deschamps [00:12:24]:
That's what we heard over and over. Maybe something's wrong. R Come back when you're when you are in labor, and we'll figure it out then. So 2 weeks later, I I, r By myself went back to that hospital because the hospital was very, very strict r in their way of dealing with pregnant mothers. So no one was allowed in the maternity ward, art Not if you had your mother or your sister or your husband or anyone else. The restriction was to come alone. R So my water broke at 4 o'clock in the morning. We'd only been living at Tokyo in Tokyo for a month.
Sarah Deschamps [00:13:09]:
And I r Gave the taxi driver the piece of paper and went by myself to the hospital, leaving my husband and our 2 year old behind in the apartment we were living in. I ended up at the hospital and the I stayed for 2 days in the hospital because my water had broken, but I hadn't gone into labor. There were no contractions. And so there I sat in a room with 10 other women and very thin curtains between us art and tiny beds, and I'm 8 months pregnant. And I spoke very few words beyond my at that point. And so I sat in the bed eating fish full fish with the heads and the scales on, all kinds of The things that I didn't understand what they were. I I could eat with chopstick. Of of course, we were we were not art So naive as to understand the beauty of the Japanese culture and to be able to try and fit in as foreigners.
Sarah Deschamps [00:14:19]:
But this was a hospital I'm giving birth. I'm by myself. I don't have a cell phone. This is the year 2000. R I didn't have any way to even communicate with my husband. So finally, after 2 days, art They say, okay. We will it's time to induce labor. I hadn't gone into labor.
Sarah Deschamps [00:14:41]:
Art. And so then I was brought into another room with 2 other women. Again, none of the nurses spoke any English and the doctor spoke our So ultimately, they induced labor. It wasn't anything like what I had art experienced with my 2 year old, two and a half year old daughter. It was extremely art Painful. I'm by myself. The nurses are trying to help me, but they really couldn't. We couldn't communicate.
Sarah Deschamps [00:15:12]:
Ultimately, they take me into what looks like a 19 sixties operating room, meaning the walls are the whitewashed r cinder block. The lights are fluorescent lights overhead. And there are 6 doctors standing at my feet, literally standing there, r Looking at me as I'm trying to give birth on this cold operating room table with 1 doctor who speaks some English. R So the baby is born. They whisk the baby away. I don't see her. I don't Art Toucher. I have no contact with her, and she leaves the operating room.
Sarah Deschamps [00:15:52]:
And I asked for a telephone to speak to my husband. So they brought a portable phone, and I called him. And as I was talking to him, one of the doctors our Came back in and said your baby's fine. There's 1 small issue that we will take care of. It's called imperforate anus. Art And I thought, I don't even know what that is. It doesn't sound great. But if you're saying that it's small, well, great.
Sarah Deschamps [00:16:20]:
I will too. So I told my husband that, and I said, it's okay. We can go see the baby now. And so they stitched me up. Art. I stood up. I put my clothes back on, and my husband arrived at the hospital. And I sort of washed my hands of giving birth r And tried to put that that behind me, and he arrived and that's when we went to go see our baby to see to your point, to see what was wrong.
Sarah Deschamps [00:16:50]:
And that at that moment when we finally saw what was wrong with the baby, our lives changed Forever.
Mahara Wayman [00:16:58]:
Okay. Hold on. I just want you to take a breath. Yeah. I have given birth twice, and r Thank you for sharing that story so vividly. My insides have kind of shriveled, and I am in awe That you navigated that with such grace because how frightening, Oh, absolutely terrifying, actually. And I loved how you said you kinda washed your hands of the birthing. Like, Okay.
Mahara Wayman [00:17:32]:
That's done. Now I gotta be mama. But I know what it's like to give birth, and I can't imagine having to get up and get dressed and and be in that mindset. So I just wanna highlight that that alone was a traumatic experience, and I'm so glad that you had of a more normal experience before that. Right? Just so Exactly. First of all, can I ask what you what your daughter's name is?
Sarah Deschamps [00:17:58]:
Lily.
Mahara Wayman [00:17:58]:
Her name is Lily. That's beautiful.
Sarah Deschamps [00:18:00]:
Lily with an l, l I l y. Lily. And and the the there's a story of how we picked her middle name. Her middle name is Mai, and our last name is Deshaun. And so her name means dancing lily of the Fields.
Mahara Wayman [00:18:18]:
That's so beautiful. Thanks. You are in a foreign land. You do not speak the language. R You have been told your daughter has something small. No big deal. We'll take care of it. You walk in with your husband and you see something that our Alerts you to a different story.
Mahara Wayman [00:18:35]:
What is it that you saw?
Sarah Deschamps [00:18:38]:
So first of all, in order to go r See our baby. We had to put on hair nets. We had to put on gowns. In Japan, you always have to put on slippers, r And so we put on the Japanese slippers and there was a locked door where behind, our daughter was in this room. So we initially thought the baby was just in where you'd go look through the plate glass window and see all the babies in a row and it would be so cute to find yours. R But we realized at that moment that was not the case. We entered the neonatal intensive care unit, and there were about r our baby. And I'm sure a lot of that, we we were just in shock.
Sarah Deschamps [00:19:41]:
They point. R The doctor who had shown us where the baby was points to our daughter, Lily. And I ran over to her bassinet, but there are tubes. There are wires. There are art. All kinds of things that you wouldn't want, that you wouldn't understand, that you couldn't even imagine are coming out from underneath the bassinet. R She is swaddled, if you will, but with all those things coming out of her. So I look I put my face as close as I could to hers, and I say, I mean, of course.
Sarah Deschamps [00:20:24]:
You look at your baby and you're glowing and she's beautiful, and you've never seen such a spectacular child before because that's what moms do. And I couldn't imagine that she would be in this dark and bleak place. R And then I pulled my head back a little bit, and I began to really see that her right ear was missing. And, all kinds of machines were beeping r And noises were coming from all the machinery around her. And I began to realize art That clearly there was something wrong. I turned my head to my husband who's standing next to me and turned white. Art And I look to my left, and I see 3 doctors and nurses standing, staring at what is now a mother coming to with the fact that there's something very, very wrong with her baby.
Mahara Wayman [00:21:34]:
I'm sending you hugs right now.
Sarah Deschamps [00:21:37]:
Thank you. Thank you. I what's what's art. Interesting about that is that I picture that moment in my head, all of them. There are times in our lives where days or weeks or months will go by and you remember it. January was a good month art Or that was a fun week last week or I had a special visit for from someone. But each and every one of those are almost milliseconds. I still can relive in my head.
Mahara Wayman [00:22:13]:
Can I ask, r When you relive that millisecond, does it also come with the same emotions that you had? R The and I'm guessing here, but the anger, the disillusionment, the shock, The why me? The are you absolutely effing kidding me? Whatever it was that you went through, and I'm I'm, You know, I'm I'm making a a guess here, but does it still come with those, or are you separate from that mem have you are you able to separate yourself from it?
Sarah Deschamps [00:22:48]:
Art So, no, the you are correct. The emotions are very real, but they're very different from what you just said. Okay. That art moment when I stood in the NICU with 14 other babies wrapped around the wall, if art, if you will, in their beautiful bassinets and well cared for. But nonetheless, I'm focused on this 1 bassinet. It was r A relief that I was not carrying this baby anymore. I had had 4 months of worry and dress. And finally, the baby was born.
Sarah Deschamps [00:23:27]:
And she was in front of us, and her name was Lily, and she was beautiful. And my husband who hadn't been with me to give birth was standing with me. And finally, we had doctors. Whether they looked concerned or not, they were standing there. They spoke enough English to be able to help me. So art. At that moment, there was this sense of relief. It's done.
Sarah Deschamps [00:23:54]:
I've made it. Art. And maybe we're in the NICU, but I didn't really understand at that exact moment everything that was facing us. So that moment was, yeah, truly a sense of relief. I did it. It's over. And she's in front of me and she looks great to me. All this stuff aside, she's beautiful and I'm going with that.
Sarah Deschamps [00:24:20]:
So the the the awfulness, if you will, didn't come for about 12 hours.
Mahara Wayman [00:24:27]:
Art Okay.
Sarah Deschamps [00:24:28]:
And so that is when we descended into every emotion you just said, But it was a delay because the doctors didn't even, at that point, know what was wrong. And all we could RC, because she was so beautifully swaddled, was her face, and we could see that she was missing the ear on her right side of her face, but I nursed her while we were in the hospital. I in Japan, you don't nurse in public. You certainly in no way would show your body. And I they helped me to get into a private room, and I was able to nurse the baby. So, r Again, she did all the things that a newborn should do at that moment.
Mahara Wayman [00:25:15]:
Okay. I wanna point out art That as you are telling the story, I'm very visual. But all I could think was how wonderful that you were given that time. The universe really wanted you to fall in love with Lily without the fear and the worry and all of the things that you're gonna experience very shortly. So I just think it's really beautiful that you had 12 hours of that joy and relief and recognition that, yeah, you had done it. You had done your very best to bring her into the world, and now she was here. So you've had a half a day to sort of be immersed in that joy and that love and that beauty. R When did you finally when did it when did the shoe drop? And you went, k.
Mahara Wayman [00:26:14]:
Wait.
Sarah Deschamps [00:26:16]:
So, again, my husband had to leave, So meaning wasn't allowed to stay in the hospital. We saw our baby. He and I hugged and embraced and were art Joyful to be together and to see our baby together. Again, all of the emotions that you feel as new parents, the pride, the happiness. But he had to leave, and those were the rules. And in Japan, there are many rules, and it makes for an amazing society of people who r can understand rules and follow rules, and it it makes for a fascinating place. But when you've just given birth and you our desperately want your husband next to you. The rule that he can't stay was horrifying r and that our 2 year old needed a parent.
Sarah Deschamps [00:27:07]:
So there was a pull and there was a push. So he left.
Mahara Wayman [00:27:13]:
R And
Sarah Deschamps [00:27:13]:
I was sound asleep in the room that they had me stay in at the hospital, not with our baby. Art And about 4 o'clock in the morning, someone came in to wake me up. Now I have just given birth. I was out of it. The it was a doctor who had been at my side and told me that the baby had imperfect anus.
Mahara Wayman [00:27:39]:
Art And what
Sarah Deschamps [00:27:39]:
he said was Sarah Sara san. So Sarah, it's the formal way of saying Sarah in Japanese, Sara san. R Something is very wrong with the baby, and your husband needs to get here in the morning and we have to talk to you. R So early the next morning, Fred came back to the hospital, and we went to a very dark room. Art. Again, it's the vivid imagery, of course, that I remember. It had started raining because in Japan, the rainy season, it starts in June. R It had been beautiful the day before I went in the hospital and then pretty much rained.
Sarah Deschamps [00:28:17]:
And so I remember the rain, and I remember seeing 3 doctors Sitting across the table from my husband and me in this dark room where the doctor who had been there when and taken the baby away and come to see me in the middle of the night, was now standing at a whiteboard at the front of the table.
Mahara Wayman [00:28:41]:
R And he was drawing a
Sarah Deschamps [00:28:41]:
picture of the lower abdomen of what a baby should look like in the lower abdomen, art And he explained the digestive process. So Fred and I are nodding our heads. Yeah. We understand that. Art. And then he draws a picture on the right side of that whiteboard, and he draws what looks like the bottom of of r body with the legs and the belly. And he draws a big circle inside the lower abdomen of the baby. And he says this is what your baby looks like.
Sarah Deschamps [00:29:13]:
And that is when the horror and the shock and the feeling that this cannot possibly be happening. Go back to the left side, please. Art. That is the way the inside of the baby should be. So it was at that moment that he said, your daughter has something called cloacal anomalies. And what that means is when we are in gestation inside the stage of a fetus, only a few days old, that there is an enzyme that comes r and does the separation of the uterus and the bowel and the bladder. And that pesky enzyme did not show up. And so in lily's belly.
Sarah Deschamps [00:30:05]:
What they had told us at 5 months old, maybe there's a dark shadow we r Can't quite tell. And we'd gone through the rest of the pregnancy not knowing that for sure there was something wrong. R And even when I had been at the hospital for the check 2 weeks before, they had said, we don't know. Maybe, but when she is born, we'll for sure tell you. So there's this sense of r It cannot be happening to us. How can this be? We have a beautiful 2 year old. Fred and I art. My parents are healthy.
Sarah Deschamps [00:30:44]:
His parents are healthy. Everyone I mean, you go through this long, long litany of things that you art even imagine this is happening. Plus, when you look at the baby now granted she had been swaddled. R But when you look at the baby aside from the ear, you could you couldn't tell there was anything wrong. R And at that point, the doctor who could clearly say there was something swimming in both threads in my head about what are you talking about r said, you cannot see what's wrong because it's all on the inside. R And the only indication that we had was what I told you, Sara san, when I came in to see you right after she had given birth, r After I had given birth and what the daughter had was imperfect anus, which means there's no hole for stool to exit her body. R And there was no way for her to go to the bathroom in the form that she was in. R So the baby would have died of toxicity within hours if she hadn't if she didn't have an operation.
Mahara Wayman [00:32:01]:
R So you mentioned the enzyme that separates the bladder, the bowel. Did she have a functioning bladder? And a functioning it's just that they were all together? Or
Sarah Deschamps [00:32:14]:
So the short answer is yes. She did. R There was a uterus in there. There was a bladder in there, and there was a bowel in there. But the what that enzyme does is art Pull them through so that they go to the exterior like most of us have so that you can go to the bathroom. And for her, neither of those, neither the bladder nor the bowel could have urine and feces exit her body as they should.
Mahara Wayman [00:32:44]:
Did she have an emergency colostomy?
Sarah Deschamps [00:32:46]:
Yes. So that was what the doctors told us in that dark room with the rain was art. A piece of paper was passed across the table with green boxes. I'm sure most of us remember from a long time ago or those of us who are art Old enough to remember from a long time ago, there were pieces of paper that you had to sign with boxes that you should fill in. R The paper was all in Japanese, but what we were signing away was our daughter's life Because she needed to have an operation that will make it so she can go to the bathroom, and if anything happened during that surgery on a 12 hour baby, then, she could die.
Mahara Wayman [00:33:34]:
Right.
Sarah Deschamps [00:33:34]:
So that's what that paper was.
Mahara Wayman [00:33:37]:
I think our listeners need to take a deep breath as well. So we're gonna take a short break right now, but I'll be back with my guest within 60 Ladies, unlock your inner badass and transform your life with my monthly subscription workshop. For just $47 a month, You'll have exclusive access to work closely with me, Mahara Wayman, as we dive deep into all things badass from personal development meant to conquering your goals. Imagine waking up every day with confidence, purpose, and a smile that radiates your newfound strength. Take advantage of this badass opportunity and join us today at www.mindfulnesswithmahara.com and start your journey toward a happier, more confident you. Smile when no one is looking. You've earned it. The scariest thing for any parent to go through is this being told that there's something wrong.
Mahara Wayman [00:34:39]:
R And I can appreciate the fear that you and and Fred must have been experiencing at that moment. Let's move forward a little bit. She has a surgery.
Sarah Deschamps [00:34:49]:
And that surgery does exactly what you said. It's a colostomy and a vaginostomy. And so what it does is, art There's a tube that's sticking out of her belly and, and art of her belly. So when she came out of that surgery, she had bags and tubes and art things that made it so she could go to the bathroom. And that was how she came home from the hospital. She had to remain there for 5 weeks. We had to go I went every day to see the baby. But, again, Japanese rules were that you could go for 2 hours a day.
Sarah Deschamps [00:35:30]:
Art. That's it. And so Fred couldn't leave work, and it was a half hour away just to get there and to the hospital from where we were living. And we had 2 year old, and we're trying to take care of her. So first, my mother flew it from Minnesota to Japan, and then Fred's mother r Fred's from Belgium, and Fred's mother flew from Brussels and spent the next month with us. And so r We learned to get used to a baby that had a a bag sticking a a tube sticking out of her what was her bladder.
Mahara Wayman [00:36:07]:
R Traveling, the the tube was maybe
Sarah Deschamps [00:36:07]:
3 feet long and it had a a bag at the end of it that collected her urine r And had she had a colostomy that we had to, clean and remove r Many, many times during a day, during the evening at all times so that she could go to the bathroom. Art And that's how she was. And at that moment then, this is, a few weeks after we brought her home r the hospital. We had to decide where would we have the surgery that would repair her body.
Mahara Wayman [00:36:42]:
Were you given the option to go back to the States for that?
Sarah Deschamps [00:36:46]:
So at that point, we were we were extremely lucky. We had a doctor. R We had insurance that allowed us to see basically any doctor in the world. And so r That opened up the world to us in terms of trying to figure out who are the best doctors for r What was wrong with our baby for cloacal malformation? It turned out there are 3 surgeons who really know Exactly what this is and have been trained specifically in how to fix colloquial malformation. Art They're all in the United States. So the next adventure that happened was I r I would fly from Tokyo to Los Angeles where the one doctor that we chose r Worked out of Children's Hospital Los Angeles. We would live at the Ronald McDonald House. Lilly would have an operation.
Sarah Deschamps [00:37:52]:
R We would stay for 2 months in the Ronald McDonald House with back and forth trips to the hospital, art And that happened multiple times over the next 7 years. So we basically lived in 2 cultures in two time zones with Fred trying to keep his job with the airline so that we had the financial means as well as the assurance to keep our family going. And Emma, our two and a half year old at that point, and Lily and I art would be in Los Angeles, and Fred would travel back and forth as was needed for various operations. R By the end of 7 years, Lilly's body was repaired. They created a new bladder for her. R The bowel was there's a procedure called the pull through, and the pull through connects the end of the colon to the outside, if you will, r So she could go to the bathroom, we found an amazing surgeon who made a prosthetic ear for her. R So her right ear looks exactly like her left ear, and her little blonde head of hair grew over that ear anyway. And, by the end of 7 years, her body was put back together again, and she had 7 operations in those 7 years.
Sarah Deschamps [00:39:16]:
R So lots of travel between Los Angeles and Tokyo and still trying to love the culture. And maybe for others, that's the hardest part to To understand, but we loved Japan. We loved living there. It was a thrill to be a part of it. So every time we got to go back from an operation in Los Angeles. We would embrace the culture in a new way.
Mahara Wayman [00:39:41]:
Art Think it's amazing that you were able to hold on to the magic of your original beliefs around the culture. And I really say I say that, and I I've lived there, so I know, first of all, that it is beautiful. But as a parent who has been I've been very fortunate. I've never experienced anything like that with either of my children. I can't imagine art The exhaustion of those 7 years. And I'm I'm curious. R What did you do, if anything, on a regular basis to shore yourself up? Okay. Sarah, let's go.
Mahara Wayman [00:40:23]:
Okay. Emma. Lily. Let's go. Okay. What did you do?
Sarah Deschamps [00:40:29]:
So maybe it's back to opening that front door from our apartment where we would say every day, okay. Here comes the adventure. R We could cover up Lily's issues, if you would, by putting clothes on her. Art. People couldn't see the tubes and the bags, and we put a hat on her sweet little head. So r Nobody asked questions. So we could hide behind the door, if you will, to make sure we took care of our family r And that Lily's needs were met. And Emma, our two and a half year old, her needs were met.
Sarah Deschamps [00:41:13]:
And when we opened the door, art. We every day would go and explore the city. So for example, there are shrines all over art Japan and in specifically in Tokyo. You can't go 3 or 4 blocks without finding a a shrine. So the girls and I, on the way to preschool or on the way to whatever we were doing, would stop at a little shrine. And Emma, the sweetest, at that point, 3, 4, or 5 year old would you could clean your hands with by ladling water from this purified, bowl and clean your hands and then you could walk up to the shrine and ring the bell and toss a 10 yen coin in, clap 3 times, and make a wish. Art And maybe that was another way for us always to remind ourselves that there's a way to be centered out in the world art And still explore it and see it and feel it even though life was really, really complicated for us. R Being in Japan made it so we could find another world beyond the hospital.
Mahara Wayman [00:42:35]:
R Such an important lesson when we are struggling and when we feel that we have been beaten down or gotten the short end of the stick art Instead of railing at God or the universe or whatever your faith you happen to be in, recognizing that there is There is an adventure there even if it hurts, even if it's disappointing, even if art. It's you know, you say that this isn't what I asked for. Hello? I'm so excuse me. This isn't, I think you got my order wrong. I didn't ask for drama, art. And I didn't ask for pain and, you know, for my my beautiful child to go through this. But you got it, art And you managed to sort of navigate it with real bravery is what I'm hearing. So I just wanna call that out because, man, so badass.
Mahara Wayman [00:43:25]:
I'm curious, though, really. When now that you're you know, this is in the past. When you look back on that 7 year stretch, r Is it very clear to you why you experienced it that way, or are you still kind of scratching your head going, really, universe? Art How come stayed here and done this?
Sarah Deschamps [00:43:45]:
Like, I'm curious. That's a that's a very good question. I believe art That let's see. We still struggle. Our daughter, Lily, still has things she's trying to work out in this world. R She has had 7 more operations since we've come back from living in Japan. None of them did we know were coming. None of them did we expect.
Sarah Deschamps [00:44:11]:
So the the experience of those 7 years in Japan encapsulate a time where we had something else to do and to love and enjoy and to celebrate as a family in addition to Lily's medical issues. R So coming back to the United States, we we left Tokyo in 2007. And I think it's a good story about how we left r as well. So Northwest Airlines went bankrupt and was bought out by Delta Airlines. Art. And so, ultimately, we had to leave Japan. So it felt like, again, another loss in our family. Art That's something that had held us up, that had allowed us to travel all over Asia, that had allowed us to have our art.
Sarah Deschamps [00:45:10]:
Children explore and see a different culture had come to an end. So we had to leave and we came back to Minnesota. And r So there's true sense of loss in coming back. And soon after we arrived, we Found out that Lily's new bladder had stones in it, and so she had to have r Another operation after we arrived. And what felt particularly r Difficult about that was that we didn't have the excitement of going back to Japan when we left. Art. The doctors now spoke. All of them spoke English.
Sarah Deschamps [00:45:55]:
We didn't have to travel to Los Angeles anymore. There are fabulous doctors and hospitals in Minnesota. So we felt so privileged to be able to live in a place where they have outstanding medical care, r But there was no longer the front door to open and to go out into a different place. Life was life, art And so we had to find our way to make it be a good life even though no we no longer had the thrill of being able to explore Japan.
Mahara Wayman [00:46:26]:
I think it is so interesting that what you've said, what I heard was, r We had to get used to living the life that we should have lived all along. And I'm wondering if there wasn't a level of guilt perhaps that wow. Can you believe I'm I'm missing that? Like, what am I thinking? I mean, like you said, I'm I'm in I'm so blessed to be living in a country or in a city that has the best medical care available, and I'm bemoaning the fact that my adventure in Japan is over. It's it's interesting. I can just yeah. Boy oh, boy. You've really You've gone through the ringer. I have another question for you.
Mahara Wayman [00:47:13]:
I I'm I'm wondering, how did you navigate giving attention to your oldest child? Art Because I have 2 girls, and I can just imagine the energy that Lily brought from you. R may have been at odds with the energy that you know, there's only so much energy that a parent has. So I'm just curious. How how did you navigate that? R
Sarah Deschamps [00:47:36]:
So in the in the beginning, if you will, when Lily was born, Emma r Absolutely adored her sister and could not get enough as an older sibling does. The the baby that was in mommy's our tummy now exists in this world, and I can hold her and touch her. And and Emma loves to have Lily come art Come with her, if you will, in quotes, out to the playground and watch her on her swing. And she thought Lily was the greatest toy ever invented And loved her up until about the time Lily started to walk, which I also think many parents can relate to because the r The young the baby who's now, whatever, 1 or 2, now steals toys and is doing things that are annoying to an older sibling. R So even though we were going back and forth between Los Angeles and Tokyo, r Emma had a full and wonderful life with parents and grandparents And with, the help of a woman we actually hired who came to Los Angeles with us art. To be able to take care of her and make life good for Emma well. I was in the hospital and while Fred was back in Tokyo. But after about age when the when baby Lily was 3, I kind of had had enough.
Sarah Deschamps [00:49:07]:
And as as you are exactly right to ask the question, typically, it's hard to be an older sibling as your younger sibling has an attitude of their own. But in this case, Lily did take me art And Fred away from Emma. And that's hard. And she was this amazing. Emma is to this day an amazing young woman, but she had a lot of time she had to spend with her parents, r racing to the hospital to take care of this other child. And no matter how much the older sibling art Loves her younger sibling and wants to have the best life possible for the younger sibling. It's art Hard. And she would say the same, and she's 23
Mahara Wayman [00:50:00]:
years old. It is hard, and I really honor Whatever it was that you did or said because, first of all, being a parent, toughest job in the world. Right? I I I wrote in the book. One of my stories is about how courageous it is to be a mom. And your story exemplifies the courage needed to be the best mom that you could be in every single moment that the universe gave you. Art. So I applaud you for that, and I'm glad that both your daughters, You know, they chose you. That's that's the way I think the world works.
Mahara Wayman [00:50:39]:
You know? I need to learn a lesson. I'm gonna choose this amazing mom and dad to be my to be my parents. R I'm wondering. Emma's 23, you said. So Lily's about 20 now. Yeah. What what's their relationship like today? They're adults?
Sarah Deschamps [00:50:54]:
Art It's it's still tough. So, they they still struggle. What they would say is that they both r very different personalities. Emma's in law school. Emma has decided to save the world, which we all need more Emmas in my opinion. Art. And she is this strong willed person who also likes to see the world, who likes art The way she says it is that, mom, I like to see the world in black and white because then I can pick right from wrong art And I can put the bad guys away is what she says. So I think Emma has sorted out the world by Trying to make decisions between, what's good and bad, right and wrong.
Sarah Deschamps [00:51:45]:
And maybe that was her way of dealing with things. R Whereas Lily is much more of this lively, happy go lucky. Life is coming at me one day at a time, and if it would art. Slow down more to the next hour or 2, that would be okay too. Strong opinions, but not as, doesn't see it as much as she wants to push herself to be able to see what the rest of the world is like and how she can solve the problems of the world the way Emma does.
Mahara Wayman [00:52:16]:
R Thank you so much for sharing that. What a beautiful story of well, of everything, actually, of love, of trust, of surrender, of belief, of of Hope. Can you talk to us about your book? I know you're on your second one, but I wanna know more. Let's start with the first one. You've published a book.
Sarah Deschamps [00:52:36]:
Yes. So I decided maybe a year into the experience of being with Lily that art. It might be a story that's worth telling. And I think a part of that was what kept me going through everything. Meaning. I took copious notes on absolutely everything that happened during those 7 years. I wrote dates. Art I wrote times.
Sarah Deschamps [00:53:05]:
I wrote names of these complicated operations that she had, names of doctors, where we were, what happened to us, art To be able to keep notes for those 7 years. So then I went on and did these other things in a career and helped our Two beautiful daughters to be raised even with the complications that Lily had. And r One day in the back of my mind had the idea that I would put it down on paper. So after years years years went And I still had the notebooks tucked in the back of a closet. We moved to Florida, and Fred said, r Alright. Take the books out, the notebooks out, and write something. Just start. So I started, And it became a 400 page, really not very good manuscript and just a lot of stories.
Sarah Deschamps [00:54:04]:
Art. And then I took a lot of writing classes because my background isn't in writing. And I reworked it and reworked it. And I found 20 kind souls who were willing to read all of that words and gobbledygook, if you will, and help me to whittle it down to create a story. So after 7 years of working on the story, art. I ended up with what I was so proud of, to have a true manuscript that was ready. So the issue then is I really, really, really wanted Simon and Schuster to publish my book. And so I was gonna go with 1 of the big five, and they were gonna take me because I thought I had the most brilliant book ever written.
Sarah Deschamps [00:54:51]:
Because, otherwise, why would you write it if you didn't think you had the most brilliant book ever written? Well, none of that happened. They never reached out to me. I never had the opportunity, and I tried and Tried and tried. And finally, one day, after Fred had said multiple times, why didn't you just self publish, Sarah? Art I finally did. And so that's how, if you will, I birthed my 3rd child, which is this book. And I'm so Excited to know it's out in the world. And it's a story that I think many people, even though the horrors of what happened to us are not things they can relate to. They can relate to a parent, a mom, doing art Everything she possibly could within her power to save her daughter's life and keep her family together.
Sarah Deschamps [00:55:46]:
And so there's a resounding story when people write it and re read it and then write a review about it. Art. Almost all of them are in shock that they couldn't put the book down and they couldn't stop reading and are thrilled by A story that goes in such deep description of what it's like to be a mom in a really hard situation.
Mahara Wayman [00:56:13]:
Art Wow. And what is the title of
Sarah Deschamps [00:56:14]:
the book? The book is called Journey to Japan, a lifesaving memoir.
Mahara Wayman [00:56:20]:
Beautiful. Look at all those Post It notes. I love it. It's so interesting that you how you refer to, you know, your 7 years. R When I I self published my book because like you first of all, my book is too small to for anybody to even publish, so I had to self publish. R But I did have the idea that this book was gonna be like the gateway to my my career, and it hasn't been. But it served a purpose. And I remember when I finally pushed the the yes button enter button for Amazon to self publish.
Mahara Wayman [00:56:52]:
It was gonna go public, like, publish it. It took me 2 hours to press it, first of all. I was sitting on my front lawn in the middle of summer beginning of summer. And as soon as I pressed it, I burst into tears, and I sobbed r Because I thought, what have I done? Who am I to do this? Like, WTF? Art What? Everyone's gonna know now that that I that I think I can write or that I think I have a story or r Or everyone's gonna question, who is she? Who does she think she is? Like, all of the self doubts and the stories just came flooding, and I just sobbed. Art. And, of course, it was the best thing I ever did because it was the beginning of my foray into standing up for who I am and what I wanna do in the world. So I just wanna say congratulations. Not only did you navigate a really, really difficult time And continue to do so, but you have found the wherewithal to actually share your story.
Mahara Wayman [00:57:51]:
And I know the story is amazing in print because r I we've gone over way longer than any other podcast that I usually do because I wanna know. And I think our, you know, our listeners are going to really art Resonate with and enjoy the story of your bravery. Part of being a badass is looking at the life that you have and going, okay. Where's the adventure? Okay. I get it. This is tough, but there is still magic behind that. There is still a beautiful child waiting to enjoy her life. There is still a country that has something to offer me.
Mahara Wayman [00:58:29]:
There is still this. There's still my hope. There is still my love. There is still you know? So I wanna say I wanna thank you for that.
Sarah Deschamps [00:58:37]:
Thank you.
Mahara Wayman [00:58:38]:
Art. I wanna touch on first of all, I wanna know what's your 2nd book about.
Sarah Deschamps [00:58:43]:
So this this 2nd book, Back up for 1 minute. There maybe the most important gift that came from writing this book was after Lily finished reading it. Now she's the one who said, mom, write that book. Ultimately, you have to write your story. And when Lily read it, she said, mom, art. It's like shaking hands with my younger self to say hello and to understand what happened to me. So if there's one thing to come from the book, that lit my heart up r and made me so happy. So Lily, again, has said, mom, I want you to write what happened next.
Sarah Deschamps [00:59:30]:
R So the book ends in this beautiful, lovely way where the airplane lands back in Minnesota after 7 years in Tokyo, r And so it's all wrapped up with a neat bow. But life didn't happen that way after the airplane landed. R So the 2nd story is actually about mental health because, thanks to the permission of Lily, She has gone down a really difficult path of coming to terms with what happened to her r And that the the surgeries did not end after we arrived back in Minnesota, that there were 7 more. And through each of them, art. What she says is, mom, I don't remember the first 7, but I remember everything from that point. And that was art. And it made it so making friends was hard. And it made it so it was hard to be in school.
Sarah Deschamps [01:00:26]:
And it made it hard to have a life r To do activities and that life it wasn't fair what happened, I think is what she would say. Art. So this next story is to explain the things that happened like the first story does, but what the mental health implications that happen as a result of each of those next things. R And to tell Lily's fine now. It's all great, but it has been a rough ride. So that's what's next.
Mahara Wayman [01:01:01]:
I'm excited for that book. It's so needed, and, you know, I'm sure there are people listening that are right with you going, wow. Oh, that's so tough. That's yay for you. But I wanna highlight that, you know, Lily is not the only one that struggled or that had because she has a sister. She has a mom, a father, friends, cousins, uncle. You know, all of that. The whole family, I think, our Suffers when 1 person in the family has a mental health challenge.
Mahara Wayman [01:01:33]:
I believe the entire family has a mental health challenge. We cover it up. We are just beginning to have the conversations now. Thank you for having the courage to write this story. It's a beautiful wrap up to the first, and I think it's a beautiful homage to what Lily's gone through. Because until we acknowledge and see r Each other for who we really are, the pain, the tears, the it's not fair, art Then we're not until we do that, we're not really seeing the person. So I think you're really honoring your daughter's existence by telling her story.
Sarah Deschamps [01:02:12]:
And she's so kind to let me tell it because we are now finally in a world where we can begin to talk about the mental health issues that people art suffer from and have suffered from. And so you you're absolutely right. It's an impact on a whole family, if not her our Lowe's community. And so, therefore, I I'm so thankful she's letting me tell the story.
Mahara Wayman [01:02:37]:
But she's a special girl. Right? She fought really hard to be here.
Sarah Deschamps [01:02:41]:
She did.
Mahara Wayman [01:02:42]:
That's beautiful. So you're writing a second story. Are you teaching art at all.
Sarah Deschamps [01:02:49]:
No. I have not since we came back to Minnesota. So I have decided that I wanted to give this writing a try as a real opportunity to meet people, to go to conferences, to have others really critique my writing. And I hope what I might be able to do is teach some classes About what it's like to write not the great category of memoir, but perhaps memoir that are related to medical struggles as a mother with a child. Yeah. And so there are a few opportunities that have come up. It's a very strong writing community here in Minneapolis Saint Paul, the Twin Cities. And I feel so lucky to have landed here so that I can be a part of that and see art.
Sarah Deschamps [01:03:40]:
See where this takes me, this adventure of being a writer.
Mahara Wayman [01:03:44]:
Oh, I love it. I I I write a lot. I'm a content creator. I have written a book, and you're so gracious. It's the first thing she showed me, folks. Those of you you're not watching if you're not watching the video and, of course, we didn't record it, but she held up my book, art, which is a tiny little memoir thing. I mean, it's nothing. It's just a sweet little collection of stories, but there is Such joy in sharing our words.
Mahara Wayman [01:04:09]:
I truly believe that the most the most beautiful gift that you can give someone is to look them in the eye and say, I see you. Whether it's through I see you through your book. I hear you. I read you. But I know that you you are here and you matter. I think that's really a powerful thing to do, and I wanna thank you for what you've done, not only in your family, but the ripple effect that it will have to all these other parents that are perhaps struggling with our navigating a medical challenge with their child or with a loved one. Unfortunately, it exists. You know? Bad things happen to good people every day of our lives, And I I really appreciate that you've shared your story with us today.
Mahara Wayman [01:04:53]:
When you look back on this 20 year adventure With all of the twists and turns and and experiences, what what have you learned the most about yourself as, you know, Sarah, the mom, Sarah, the wife, Sarah, the friend. What have you learned about yourself?
Sarah Deschamps [01:05:12]:
I think maybe 2 things. R The most important thing I tell myself is pick yourself up, get going, and whatever it is that's the the the thing in front of you that sparks your interest, go for it. And so I Tri. And that's why I thought I'd write a book and why I thought I'd, write a second one. I think the other thing that's really important art is that while we were in Japan for those 7 years, a part of me hid, if you will, art from my life and my friends in the States. And that may may sound strange to others. In fact, it is pretty strange. But I wanted to protect Lily and my family so that when people finally truly met Lily, when we would move back to the United States, she would be whole again is the way I speak about her sweet body.
Sarah Deschamps [01:06:16]:
And art What I have done since we came back, is to learn how to embrace friendship and to let people in And to explain in detail what's happened as opposed to hold back and hold inside myself, The roller coaster ride that we've been on. So this opportunity today, for example, To talk about my life and talk about my book is truly a privilege so that not only can I share with my very close Friends? But be honest with the listeners that you have about a life where I try and do my very best To push myself to do interesting and exciting things knowing that tomorrow something else challenging could happen and then I have good friends along with with me for the ride.
Mahara Wayman [01:07:14]:
Oh my goodness. You are so badass. R I am so thrilled that you took me up on my invitation to be on this podcast. Really, there's so many wonderful things that you've shared with our listeners today, and I I art you for that. What I heard just now really is the epitome of being a badass, which is it's okay to be you, art And it is okay to share what you're what you're feeling because that is what makes us human, and that is what forms a deep connection. R So, again, I wanna say thank you for being so vulnerable and recognizing that you don't need to hide anymore. R Your story is important, and I'm so glad that you shared it with us today. Sarah, we're gonna have a follow-up conversation because this was too much fun.
Mahara Wayman [01:08:02]:
Art No word of a lie. We have gone about 20 minutes longer than I typically have with with my guests, but I'm not cutting any of it art Unless, of course, I swear. But I don't think I've sworn, so I I think I'm good for that. I hope you have an amazing afternoon, the rest of your day. Thank you for joining us on the art of badassery. Please let us know your thoughts. Check the show notes because I'm gonna have All of the ways that you can connect with Sarah and, of course, get her beautiful book and support her in her 2nd book. And, of course, I would in I'm gonna invite you all To just take a breath and recognize where in your life you have demonstrated courage And a determination to see the magic in your world even if you're going through a tough time.
Mahara Wayman [01:08:50]:
My name is Mahara. This has been the art of badassery. I'll see you next week. Thank you for tuning in to The Art of Badassery. I hope you enjoyed today's episode and gained valuable insights to help unleash your inner badass. If you found this podcast helpful, Please leave a rating or review on your favorite platform. Your feedback not only helps me improve the show, but it also helps others like yourself discover the podcast. Until next time.
Mahara Wayman [01:09:20]:
Keep embracing your authenticity and living life on your terms. Here's to you.
