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Morgan Jones Pearson 0:00
In 2008, Chad and Cherisse Lunt welcomed their third child, a little girl named Lucy into their family. They didn't realize then just how much their world was about to change. Unbeknownst to the Lunts at the time Lucy was soon diagnosed with a severe neuro muscular condition. At the time, Lucy wasn't expected to live beyond 18 months of age. Today she is 15 years old. Chad and Cherisse Lunt live in Menlo Park, California where they're raising their three children. They both attended BYU and have worked in the Bay Area for the last 16 years. Lucy their youngest child was diagnosed with spinal muscular atrophy shortly after birth and despite requiring a lot of work blesses their family with peace and perspective.
This is All In an LDS Living podcast where we ask the question, what does it really mean to be all in the gospel of Jesus Christ? I'm Morgan Pearson. And I am so honored to have Chad and Cherisse Lunt on the line with me today. Chad and Cherisse. Welcome.
Chad Lunt 1:08
Thank you.
Cherisse Lunt 1:08
Yeah, thank you for having us.
Morgan Jones Pearson 1:10
So I feel like I should give a little bit of background for those listening as to how I know Chad injuries, because my love for them will probably be very apparent throughout this interview. But Chad and Sharise were in my state in California where my husband and I recently moved from, and they are absolutely incredible people and I learned so much just from watching them. It's not the things that Chad injuries, they don't go around telling people how great they are. Instead, you just watch and you observe. And so I am excited today to make them talk a little bit about themselves and their family. But to start us off, I wondered if you could tell listeners the story of how your daughter Lucy came to be diagnosed with SMA. And if you could also maybe give a little bit of background about what SMA is if you had to sum it up briefly.
Cherisse Lunt 2:13
Okay, I can start with the kind of diagnosis story because I've told it a lot of times we we had just moved to California and we had down and Josie Lucy was born on Jesse's third birthday. And Lucy was born. She passed all her newborn screenings. In hindsight, we there are a lot of things that we just didn't realize were kind of big things. But she was born typically a healthy baby with no issues. She always kind of had trouble latching on when she was nursing. And I think there was a long time where every night, Chad and I would take turns taking her on drives, because she was just we thought that she was just colicky. And so those were some of the things that we had kind of noticed. And about three or four months, we noticed that she was a little bit floppy. So like when I would hold her on my lap, like after a few minutes, her head would kind of flap to the side. And when we would put her on her tummy, she would just just lay there. And I didn't I never thought that it was something big. But when I took her to I think her four month wellchild appointment. I just mentioned it to her doctor, and her doctor said, well just show me like put her on her tummy and show me what you mean. So I put her on her belly. And I could tell that she was thinking about like what it could be. And she asked if she could step out for a minute. So she stepped out of the clinic and she was gone for a few minutes. When she came back in. She said I want you guys to meet with a neurologist next week. And so we set up an appointment for the next week. And during that whole week. Chad had done some research. And do you want to tell that part?
Chad Lunt 4:02
Sure. So I'll start off thank you for the very generous words at the introduction. Jumping back, you know just doing some online research on some of the symptoms like we came across or I came across spinal muscular atrophy and some of the typical symptoms and just have very strong impression that this was this was likely it and encouraged Cherisse or I guess kind of off demand demand is probably a strong word, but requested that she include this in the tests that would be run by the neurologist.
Cherisse Lunt 4:38
Yeah, and he also had sent an email to family saying like, Lucy could have potential diagnosis like please pray for her. And I remember calling my sisters and saying I think he's crazy. Like I don't I don't know why he would think this, but but it's a little crazy to me. And so when we went in for the upgrade meant the next week, he had sent me a text. And while we were in the office with a neurologist, she was kind of like hitting her knee with a little reflex hammer. And we were just kind of talking through kind of like some of the things that we had noticed. And while I was in the office, I got a text from Chad, and he said, Make sure she checks for spinal muscular atrophy. So I showed her my phone and I said, my husband really wants you to check for this. And she says, Oh, I really hope not. But let's just include it in, like in the panel. And so she she did, and we went downstairs and you know, did the labs, and then went home, and we had to wait a couple weeks for the results. And when when the doctor called us for the results, she just said, can you guys meet with us on Friday, and it happened to be a day that Chad didn't have work. So we met with her we went to a different office, which would have been a big clue that something you know, they had something big to say to us. So we went to that different office, it was just Chad, me and Lucy. They had set us in a room. And the neurologist came in and after our pediatrician came in, and that's when I knew like, Oh, this is this is going to be big news. And, and then they just jumped right in and said Lucy has spinal muscular atrophy. And while they were saying like, we're so sorry, I still didn't really know what, what this would mean for our family. But Chad did like he already had known what the diagnosis was, he had researched, or at least had known, like some of our future, and I didn't. And so that is that's how we that's how we found out.
Chad Lunt 7:17
Yes, you can't prepare for that. You just, you know, it was just,
So first question house, how scary was it? With the perspective of the gospel there? Your worst fear isn't death? If that makes sense. Your worst fear is? Can you live up to this humongous challenge? Do I have it in me? So that that was the fear? That was the concern for me is, is the amount of work and and challenge and heartache for your family and your other two children to to be stoic and show optimism and confidence and and face when you're managing a pretty challenging, pretty challenging thing. So I think that was the first question is, as far as I was scared. And then what was the second question? Sorry. Second question was did you ever have thoughts of why her why us? Yeah, I didn't process that question until maybe four years later, when when someone who was doing a recording about Lucy asked us that question. We didn't really have those questions then. But I did. I did have the thought when they asked us that, you know, thinking about thinking about it after having some years of perspective. And I don't want this to sound more than it is but the kind of the the thought kind of came to me of why not us and that we had, you know, maybe streets they'll say something different but I felt like we had a good marriage we had two healthy children who loved and and encouraged Lucy we had a stake and Ward community who loved us and sacrificed and, and, and helped us we had loving and supporting family, some who lived close during that time to, to be was and care for us. We had wonderful faithful examples on both sides with parents. And we had a community and state and county and school resources that are unparalleled, that have have been a huge blessing to her. So again, maybe not as raw as in the moment thinking that but when I've thought back on that question, that's the that's the question. That's the answer that I can't get away from is is, there's so much that makes sense. And it's right about it. Considering everything, and we have friends in the same SME community who don't have it as good as us with regards to what we're saying. For me, it was absolutely terrifying. I had never, I think neither of us had have anyone in our families who've had a life threatening diagnosis. I grew up in a small town where there wasn't a lot of diversity. And so I'd never been around someone you know, with Lucy's like level of medical needs and physical disabilities. And so and when we didn't we I don't have any medical background, Chad doesn't have a medical background.
Cherisse Lunt 11:32
The entire thing was just terrifying. Because there was so much to learn, like the learning curve was so steep I remember the first time the well after Lucy had her first appointment with her neuro doctor just a couple days later, like two machines showed up at our door and there was no one to show us how to use them. So so she did a lot of things on our own. And I had to figure out all the insurance stuff all by myself and like it was really absolutely terrifying.
Well, it's interesting how her hair changes as she ages because she has more of a say in her care as she gets older. But Lucy is she's completely dependent on us for everything. So that means like from, you know, doing her hair, to applying her makeup, to breathing treatments sectioning her positioning her body in ways that are comfortable or that are like that will prevent her from choking or her airway from closing up. She needs to be watched 24/7. So we have nurses that help us if we if we don't have nurses and it's us through the night.
Chad Lunt 13:06
I'm trying to say it without any emotion. But Cherisse says literally if not figuratively, mostly literally, and almost single handedly carried this child back from death for 15 years. It was mostly her in the hospitals while I was home with the other children managing through some very intense, intense care in the pediatric intensive care unit at Lucile Packard Children's hospital she has navigated and spoken with medical professionals and and and been the hands and feet and eyes and neck. She has been everything to Lucy and it has been amazing to watch. I'm you know I find myself you know, standing on the sidelines as I watch Cherisse push Lucy on a half marathon. I will I find myself trying to keep up as as she provides access to the entire world for Lucy and she does it by advocating at school at church everywhere. Sharise has given her entire existence to allow his little girl to access the world. And I take no credit and it has been it has been amazing to watch.
Morgan Jones Pearson 15:01
Well, it's a good thing that I'm not on video right now. I am getting emotional right there with you, Chad. For those that don't know, Lucy, I will give my perspective of what Lucy is like as a teenager. Lucy loves makeup. Lucy loves Taylor Swift. Lucy is working on multiple books at the same time. And she sang at our wards Fourth of July breakfast a solo. She's incredible. And so I wondered how have the two of you approached a situation where you don't ever know, I guess none of us know how much time we have with anyone. But in her situation, you don't know how much time you'll have with her. But you also want to encourage her to live her life to the fullest. And I'm curious how the two of you have have managed to do that because you've done a beautiful job of it.
Cherisse Lunt 23:36
Think that, you know Lucy one one thing that I've learned is that like people like Lucy that have you know, very calm complex situations or needs, they behind it all they're, they're just human beings. And all the things that make our lives great and your life great is the same things that make her life great, like her, you know, relationships with our family, with our community, access to the world to the things that she's interested in her hobbies or interests. Like they all contribute to her life and, and something I always have to remember is that and I'm learning more as she's getting older and kind of tells me to back off on most things is that things that I enjoy about wife are different than what she's an enjoys about wife and so it's it's made me have to kind of step back and let her take the lead on you know, deciding what makes her life gray or what she would like to do in her life.
Chad Lunt 24:47
The only thing I would add to that is in addition to all the things that STS mentioned. She also she also likes to work hard and then succeed. So she'll she's in a geometry class right now and and you can imagine math as a concept without being able to count and touch, and, and move things is a little bit of a unique challenge for her. And so we watched her study and study all night, and she would ask us to come in and we would quiz her. And then she did really well on a test. And so just like for all of us working hard and achieving something, she she does that too. So she's, you know, in spite of all making it happen.
Cherisse Lunt 25:48
Something that I've learned through other people's ministering or, you know, serving us is that it never needs to be something big or something super thoughtful, it can just be, hey, I'm praying for you guys, or just popping in to say hi, or just thinking of us. And so that's helped me realize that I don't need to, you know, cook an elaborate meal for somebody and I don't need to make a quilt or, you know, anything that's time consuming, but it's just, it's just like the kindness and being thoughtful and genuinely loving and caring for others, that is really is really ministering.
Chad Lunt 26:36
I would say, it seems like when someone approaches you and wants to have a conversation about something hard, you're going through, it's human nature to kind of want to compare and relate to that other person through what you perceive to be a similar challenge or similar trial or comparable challenge. And, and I think that I remember early on people would, would share their problems with us. And then they would feel bad for sharing them with us, because Oh, but but, but what you're dealing with is so much worse. And I think that what what I've learned from that is that it doesn't matter. The magnitude or scale of the problem to some extent, it's just, you're going through something hard to and and so, you know, as you compare to the Savior, who has experienced all of those, no matter the magnitude, or scale, he's not, he's not tempering or, or, or reducing his care, in the same ratio of the severity of your challenge. He's just, he's loving you. And he's, he's, he's saying that's hard. And I'll be there with you. And anyway, maybe too many words. But that's how I felt about is that I've just learned that people are going through hard things and hard is hard. It doesn't matter if it's a situation like Lucy's or your you didn't get the job that you wanted, like if someone's if someone's hurting and has gone through something hard that that you don't have to you don't have to, you know, measure the care or the sympathy or empathy that you're, you're sharing that part is hard. Anyway.
Morgan Jones Pearson 28:17
Absolutely. I think that's such a good point. I think Cherisse your point was so good as well. I think that's one thing that I learned from the ward that we were in together is that ministering looks a lot of different ways and you can bring the thing that you're good at or the way that it feels comfortable to you to minister you bring that you don't have to do something that's, you know, terribly out of your comfort zone in order to minister but I did want to share speaking of getting out of your comfort zone. I hope you guys don't mind those listening live just recently heard elder Dane speak in general conference. And one of my favorite stories about somebody ministering to Lucy is the story about elder Danes ministering to her. Can you share that?
Cherisse Lunt 29:12
Okay, I will share the story that that I shared here we have actually so many of him ministering to our family and to Lucy and they're just darling. But the one that you are remembering. So Lucy had just had her spinal fused and a couple of rods placed in her back in her pelvis. And so it was a big surgery. He after she had come home, he had texted me and said what what is Lucy like? And so, of course, she likes you know, face products and beauty products. And so that's all I said, and I think he came by like that day or the next day and it was so cute he had and like I said I could I can just imagine him maybe he knows and he goes to Sephora or you know, but I was thinking he was probably like at a CVS or a Walgreens like walking around looking for these beauty products, but he hadn't purchased two face masks and some chapsticks. And you had a little gift bag and he had them inside the gift bag. And then do you know how the wrapper sometimes you'll usually like stuffed it in, so it kind of felt like flowers? He had it like folded nice and neat and just slit inside. It was like the most loving, endearing, like act of love, and he brought it over. And of course, he sat with her and chatted with her. And anyway, she just, she just loved that. And it just felt so sweet that he would be thoughtful and, you know, bring that over to her and show her love.
Morgan Jones Pearson 30:43
I think that's such a good example of of a stake president seeking to serve the one, and I heard a lot of those about Elder Danes during our time there. Another question that I had for you related to ministering is what have you learned about ministering in the Savior's way from getting to minister to and serve Lucy?
Cherisse Lunt 31:06
I think for me, I've learned that some of the people that a lot of the people who need ministering the most are hardest to get to, if that makes sense. So in Lucy's situation, to truly minister to her, you have to meet her where she is, you know, she has a lot of chronic pain, she gets really worn out from just going to school every day, it's very hard for her to get to young woman's, it's really hard for her to go to church sometimes, or do anything, you know, after school that social or where she would kind of run into to people in the community. And, but she still needs, you know, she still needs others. And so that it's helped me kind of understand, or just maybe pay attention or kind of walk for, for those who you don't see often. And I think also another another lesson that I've learned is that Minister administering, it just can be so so different for for every different person, if that makes sense. So, like the ways that Lucy would either and you know, need or want to be served in loved would be, you know, different than somebody else. And so it's made me more aware, be more thoughtful about, you know, the people that I'm interacting with and how and what they need, I guess would be how I would describe it.
Chad Lunt 32:37
By serving Lucy, I have learned that there's so much opportunity for incredibly practical and pragmatic outreach or ministry to people that that I find that the most satisfying are things that are it's seldom it's seldom prepared message. It's mostly Oh, ye Oh, you need that from the grocery store becoming someone that someone trust, they can call and ask for something. I don't know if that makes any sense. But it makes perfect sense. Just being being low key enough for them to think I can call chat for that. Or or, or Lucy can say without worrying about my response. Okay, can you can you scratch my nose? Or can you? Can you adjust my arm? Yeah, I can do that. And so I guess that's what I would say is I will I think one way I can minister like the Savior's being the Yeah, I can do that guy.
Morgan Jones Pearson 6:43
And before Chad saw the spinal muscular atrophy and had that impression, had anybody mentioned that it could be that?
Cherisse Lunt 6:53
No, it's actually it's actually a really hard diagnosis, because they usually will test for other diagnosis before they it's kind of worst case scenario. Right.
Morgan Jones Pearson 7:03
So Chad, do you feel like because you had researched and stuff, were you? Did you feel more prepared to receive that news?
Chad Lunt 7:23
you know, you, maybe you brace a little bit? I don't know, I don't know how to describe it other than I just kind of was there and felt the moment and anyway, it was,
Unknown Speaker 7:36
it was having us.
Morgan Jones Pearson 7:37
Yeah. Okay. And at that point, Lucy, the life expectancy for someone with SMA was how much time?
Cherisse Lunt 7:48
We didn't, we didn't really know when they wished he was first diagnosed. They said about a year to 18 months, but then we went when we met with a specialist it was that 90% of children don't live past two.
Morgan Jones Pearson 8:01
Okay, and how I just been thinking about myself with a new baby, and how scary that would be for me. How scary was that for you all as young parents? And did you ever feel like you had thoughts of why her why us? How did you approach those thoughts?
Yeah, I feel like that's very relatable because that is exactly how be Jeanette would be in that situation like I don't even know where to start. Can you tell listeners about the care required for Lucy now and kind of just a brief background on how many surgeries she's now undergone?
Cherisse Lunt 15:56
Well, I think it's actually kind of a scary thing to send her out into the world, just from a medical perspective, like, we worry about her getting sick, even a common cold can be fatal. And so our life, it feels like we're always living on the edge. And just socially, like socially, it's so difficult. And also our world is not a really accessible, accessible world. And so there are a lot of challenges. But we try really hard to let Lucy live the life that she wants to live and, you know, provide opportunities and experiences for her. And so she she kind of leads the way. I think that it really helps that she has older siblings so she can see kind of what, what to do in life. Like I remember her first day of kindergarten, I was shaking, I was so nervous to send her to school. And she told me Mom, what's the big deal? Like I'm just, I'm just going to kindergarten like it's okay. And so I think that she Lucy's a huge advocate for herself. And that really helps us support her and you know what she really wants to do?
Unknown Speaker 17:13
Right.
Morgan Jones Pearson 17:15
Another another thing I wanted to touch on is Lucy is very smart. And there have been a couple of times like you said juries where she has advocated for herself. I wondered if you could share with listeners a little bit about how Lucy has used her intellect and how you've encouraged her to do that.
Cherisse Lunt 17:36
Well, I think when you have certain limitations like like for someone who maybe is not able to see they will use their ears, or other senses. And I think with her her body is not able to do a lot on its own but her mind. Her mind is free.
And so she Yes, she uses it like she's very witty. And she's very funny to
Morgan Jones Pearson 18:05
Sharise one of the two of you should tell about her writing. Tim Cook?
Cherisse Lunt 18:11
Oh, yes, yes, so the Apple products. So on Lucy's power chair, she has a joystick and that joysticks she can connect to different devices, she can change the position of her chair, she can change the speeds of her chair, she can connect the joystick to different devices and use it as her mouse. And we can program all different types of settings for her to you know, click right click left or scroll. And all of the Apple products. It was just not user friendly. And it had this line that would slide across the screen and you'd have to select it when it would pass. And then it would once you select it would scroll the other way. And you'd have to just pinpoint it. It was just really frustrating for her to use. And so she had treated a presentation. And the first slide was her with this big sombrero. And that was her first slide. And then her second slide. I have a copy of the the letter but it was like the iPad could be better. And she described like I eat apple product user but on my power chair like this, I'm not able to use it. And so she she asked me to post it on my social media. So I did and many of our friends that work for Apple had suggested that we just send it right to Tim Cook. So we did and we got in and I had an immediate response and they were so kind and asked us if we could download some of some software so that they could kind of follow with what she was experiencing and how they can make it better. And it was really exciting because I wasn't sure she wasn't the only person who submitted this request but it was the next iOS upgrade that it came out. So now when she uses the iPad and her phone with her joystick it is just like you and I using a computer, it's just so much better. But yeah, she's, she's not afraid to let people know what she needs and wants. And I love that about her.
Morgan Jones Pearson 20:12
When you were talking Sharise, I remembered you telling me about how she also wrote the College Board trying to get her nurse to be able to help in honor tests, and then be just listening to me do this interview from across the room. And he texted me and said, Lucy also spoke in front of the school and had Josie reader speech like a boss. So we're all we're all Lucy fans, because we're all so impressed by her. Yeah, I left her
Cherisse Lunt 20:43
with her her graduation speech. So she submitted that speech. And when she was writing it, I had some ideas that I thought would be kind of an interesting perspective from her. And she basically told me that they were weighing that she didn't, she didn't want to use any of my advice. And then when when we recorded it, so we could decide because she could use the voice on one of her devices, which are a little bit robotic, or we could use a live some someone that she knows one of our voices. And so I recorded, I recorded reading her speech and Josie recorded reading her speech. And Josie for sure one, she said mine was playing.
Morgan Jones Pearson 21:24
Well, you both you've both done a lot for I feel like the SMA community, you've been huge advocates not only for Lucy, but for others that are have have SMA and just disabilities in general. How has that advocacy blessed your life?
Unknown Speaker 21:45
I think
Cherisse Lunt 21:47
I don't know if it's the experience that I've that I've been able to have caring for Lucy kind of the perspective that it's given me. But I think having to advocate for her, and kind of fight for a lot of things that she needs, I think has, I hope has developed a lot of skills in an abilities and in confidence. So I think that, yeah, I think that confidence would be one that, you know, even if I don't know exactly what to say, or how to get something, I know that if I keep trying and you know, persevere, or I'm persistent, that I'll be able to accomplish, accomplish whatever I'm trying to accomplish, whether it's you know, getting a piece of equipment for Lucy or getting a service for her or, you know, asking for something that she really needs at school,
Morgan Jones Pearson 22:37
or being interviewed on a podcast.
Cherisse Lunt 22:41
I don't I don't know if that's the skill of mine. But But yeah, just being able to kind of just give perspective, because I think it's important to have lots of different perspectives. And I think that, you know, being able to communicate our experience and our perspective, I think just kind of adds to kind of what people understand and kind of think about.
Morgan Jones Pearson 23:05
Yeah, well,
one thing that has stuck with me from a conversation that we had previously was, you told me that before you used to wonder about quality of life for someone that was in Lucy situation, but then you said something to the effect of I've realized to Lucy, she has a great life. And I wondered for both of you, what would you say makes Lucy's life Great.
She's She's awesome. What would you say? So you mentioned earlier, the support of your ward and community? What have you learned about ministering in the Savior's way as you've experienced the ministering of others around you?
I love that. That's such a good thought. You have two older children. You have a son currently serving a mission in the Birmingham, Alabama mission. Shout out to Dallin and a daughter that just started school at BYU. What impact do you think having Lucy as a sibling has had on your older children?
Cherisse Lunt 48:15
Thank you. That makes sense that makes it makes perfect sense. And I think that that is exactly what you do. So thank you both so much for being willing to indulge me in this and thank you for sharing Lucy with all of us. I am excited for more people to get to know her through this episode.
Chad Lunt 48:35
Awesome.
Cherisse Lunt 48:35
Thank you for having us.
Morgan Jones Pearson 48:40
We are so grateful to Cherisse and Chad Lunt for joining us on today's episode and for reminding us that there is so much to be grateful for in this life. Big thanks to Derek Campbell of Mix at Six Studios for his help with this episode and thank you for listening. We'll look forward to being with you again next week.
Transcribed by https://otter.ai