Terminal or Life-Limiting Diagnosis


Episode 50

Listen in as I spend some time with Brooke Stone whose son Sawyer, was diagnosed with Trisomy 13. Brooke shares helpful and practical thoughts about Trisomy 13 and her experience of carrying a baby to term that had a life-limiting diagnosis.

She shares invaluable wisdom about the decisions that need to be made, how to ensure the best possible medical care, what she did to prepare for her son’s birth, what she packed in her hospital bag and even the sweet and memorable ways she celebrated him after he was born.

We talk about hard and valuable things like the value of communicating expectations to those who are walking along side you and listen to the end to hear her priceless and incredibly helpful advice for marriage in the midst of loss and grief.

Brooke is tender and kind and communicates seemingly impossible hope in our time together; to hear a mom who has walked through such loss say “God showed me His goodness and His mercy through my son’s life. I was able to enjoy things I never thought I would be able to enjoy.” is just a massive grace to those of us listening and I am so grateful.

No matter what brought you here today, I pray that you hear the hope and the grace in Brooke’s story. That you are reminded that even amidst brokenness there is joy to be had.

RESOURCES MENTIONED


If you or someone you know has received a life-limiting or terminal diagnosis for your baby,
please check out this resource page with information and helpful resources for navigating this season.


MEET BROOKE

I am a lover of learning and changing things up! I have worked as a stylist, worked in youth ministry, and now I am getting my masters in counseling. I have a fierce passion for justice, in true enneagram 8 fashion! I have been married to my best friend and high school sweetheart, Jesse, for 10 years. I am an adoptive mama, a foster mama, and a mama to a sweet son in Heaven.

You can get to know Brooke better and follow along with Brooke’s grief journey over on Instagram: @msbstone.



CLICK FOR FULL TRANSCRIPT

Speaker 1:        You are listening to the joyful morning podcast, episode number 50 listen in as I spend some time with Brook Stone who’s son Sawyer was diagnosed with trisomy 13 Brooke shares helpful and practical thoughts about receiving that diagnosis and what trisomy 13 even is. She shares about her experience of carrying a baby to term that had a life-limiting diagnosis and she shares him valuable wisdom about the decisions that needed to be made, how to ensure the best possible medical care, what she did to prepare for her son’s birth, even what she packed in her hospital bag. She even shares the sweet and very memorable ways that she celebrated her son Sawyer after he was born. We talk about hard and valuable things like the value of communicating expectations to those who are walking alongside you and listen to the end to hear her priceless and incredibly helpful advice for marriage in the midst of loss and grief.

Speaker 1:        Brooke is tender and kind and communicate seemingly impossible hope in our time together. See here a mom who has walked through such loss, say these words. God showed me his goodness and his mercy through my son’s life. I was able to enjoy things I never thought I would be able to enjoy. Those words are just a massive grace to those of us listening and I am so grateful no matter what brought you here today, I pray that you hear the hope in the grace and the joy in Brooke’s story, that you are reminded that even amidst brokenness there is joy to be had. And lastly, if you were in a place where hope fills impossible and joy fills and thinkable, if you are full of uncertainty and doubt and confusion about who this God is that we’re talking about during this episode, my biggest piece of advice would be to spend some time in God’s word.

Speaker 1:        It doesn’t have to be complicated or overly spiritual, just getting to know the God of the Bible who can bring about true healing to a broken heart. I know how difficult opening the Bible can be amidst grief, so I created a simple resource for you, a free seven day devotional called hope for the hurting. I wrote this mini devotional specifically for women who have walked through the loss of a baby, seven days of Bible passages with a short devotion in prayer. To download that free resource, simply head over to [inaudible], the morning.com forward slash devotional. That’s the morning M, O, R N, I N g.com forward slash devotional and if you aren’t quite sure what to think about this Christian faith, if reading the Bible isn’t something you’ve ever done before or if opening the Bible just feels impossible right now, maybe give this a try. It’s a super simple way to be introduced, are reintroduced to this faith in God we about so much here. Either way, I pray this resource blesses you. Again, you can find that free seven day devotional@themorning.com forward slash devotional and one final reminder before we get started, all the resources Brook mentions in today’s episode will be listed in the show notes to find those simply head to the morning.com forward slash episode zero five zero okay friend, thank you so much for being here and for tuning in. Now let’s jump into today’s episode.

Speaker 2:        South.

Speaker 1:        You’re listening to the joyful mourning podcast, a podcast about finding joy and healing mean it’s pregnancy or infant loss. I’m your host Ashlee Proffitt, and my goal is to remind you, you are not alone in your grief and that there is joy to be had even amidst morning. I’m so grateful you’re here. Hi Brooke. Welcome to the joyful morning podcast.

Speaker 3:        Hi. Thank you for having me.

Speaker 4:        I’m glad that you are willing to spend some time with us today and to share your story with us. Uh, before we jump in, will you tell us a little bit about yourself? What do you spend your days doing?

Speaker 3:        Well, um, right now I spend my days working through my master’s program in counseling and balancing that with a three year old son named deacon. Um, and also we just moved to the Detroit area in April, so we’re still, um, exploring and finding coffee shops and restaurants and a new normal. So that’s what we’re doing.

Speaker 4:        Where did you move from? Fredericksburg, Virginia. Oh wow. I remember junior girl. That’s awesome. That’s awesome. Um, that’s a big change though, a huge change. Yeah. So I can imagine that that transition might take some time. Yeah, it was good though. It came at the right time. Yeah. I love that you’re getting your counseling degree. Was that always in the plan or is this a recent thing? It’s,

Speaker 3:        eh, more recent. My husband and I, um, were foster parents when we lived in Virginia and we had, um, three teenage boys in our home and trying to get them the help that they needed. There just wasn’t really anyone who specialized in teens. And I’ve worked in youth ministry before and I love teenagers and, um, it kind of motivated me to, to fill a need. So I’m getting my masters in counseling and I hope to work with teenagers. Yours.

Speaker 4:        That is really cool. That was really, really cool. I love that you’re doing them. So we’re doing a special series on the podcast specifically dedicated to moms who are, have received really difficult diagnosises for their babies. And so can we start there? Will you tell us about your baby and, um, the diagnosis that you received? Absolutely.

Speaker 3:        Um, well, my husband and I, we actually tried to get pregnant for about eight years. Uh, we had just unexplained infertility. Um, a few years ago, probably almost three years ago, I was diagnosed with endometriosis, um, had surgery to remove that, did a couple other things and nothing seemed to work. Uh, at this point. Um, we had already had our son for two years through adoption and we adopted him when he was a newborn and I’m really wanting to grow our family and figured that God had closed that door to do it biologically. And so we were starting our second adoption process. And lo and behold, I started feeling kind of funny and, um, my mom made a joke about me being pregnant, which I brushed off and then I couldn’t get out of my head. So I went and bought a pregnancy test and I hadn’t, I hadn’t bought one in a few years and we finally saw two pink lines and were completely and utterly shocked, um, had a lot of nerves with the pregnancy and we, we got to the eight weeks.

Speaker 3:        So the ultrasound felt really good. Finally started to get excited and share the news and I, at our 12 week appointment, we decided to do the blood test so we could actually find out the gender early. That’s the only reason that we wanted to do the blood test. And then the next week it, my doctor called and wanted to have us come in to share some results and we found out that um, the, the blood results showed positive for trisomy 13. He recommended us to a maternal fetal specialist to kind of go over what that looks like and to do some further testing. And, um, I think we were a little in denial. Um, some of those tests have some skewed percentages, so we were hopeful but also really scared. Um, and when we went to the maternal fetal specialist, she saw some soft markers on the ultrasound and we were right in the middle of moving.

Speaker 3:        So, um, yeah, then we had defined a, a whole new team to kind of help us walk through the journey. But, um, basically try so many 13, his three copies of chromosome 13 in each cell of the body. And with that comes severe intellectual disabilities, physical abnormalities, heart defects, brain and spinal cord abnormalities. Um, very poorly developed eyes, extra fingers, extra toes, cleft lip, cleft palate and weak muscle tone. Um, and trisomy 13 babies can have a whole myriad of those symptoms. They can have a lot of them. They can have just a few. Um, but basically the percentages are five to 10% live past the first year and most babies pass in utero or within the first few hours or the first few days of birth. Um, so we were devastated. Um, completely shocked. Came completely out of left field. We were not expecting the pregnancy and then we certainly were not expecting this diagnosis. Yeah.

Speaker 4:        It’s just so, it’s so hard. Yes. So hard. And there’s so many feelings wrapped up in that, that feel confusing. Like what are you doing God, after all these years? I’m imagining that those feelings were very present.

Speaker 3:        Yes. Yes. There was definitely a, uh, a very angry phase, if you will. Yeah. Especially in the midst of a move and, and having to start all over with this story again and, you know, start over with medical professionals too. It was, it was scary. It was a scary time. We didn’t know much about trisomy 13. I’d never heard of it before. Um, and so to ultimately, you know, receive a death sentence for your child, it’s not an easy pill to swallow. What was it,

Speaker 4:        the moments following the diagnosis, like you talked a little bit about what it felt like. I mean, it’s devastating. What kinds of things needed to happen after that? Um, I’m thinking about the woman who’s listening who might have just gotten that phone call or I’ve just talked to her doctor for the first time. Um, tell me, tell me more about, about those, the time following that diagnosis.

Speaker 3:        We kind of had some different experiences. So with the first initial appointment with my OB, we were given, um, some misinformation and told not to Google. Um, but we did and I’m actually glad that we did. I think it’s, you know, some doctors kind of want you to shy away from the internet. And I found the internet to be really comforting and educating. Um, the maternal fetal specialist was amazing, gave us, uh, a great recommendation for when we moved to Michigan. Um, and it was, she, she took her time. Um, and then ultimately we ended up at U of M, which is incredible and they have a lot of experience and they made all the difference for the diagnosis honestly. And I think that’s what I would share with any mom going through a diagnosis like this. You’ve got to find a medical team that is willing to sit down with you, need a knee eye to eye and walk you through every scenario, um, but not only walk you through it, but have empathy and care behind it.

Speaker 3:        And we went through the spectrum of medical care starting with not so great, to a little bit better to ultimately, um, I joke all the time. I would have these people’s names tattooed on my body because they mean that much to me. Uh, they really helped my husband and I walked through every step. And, um, what you’ll see a lot on the internet and with trisomy groups on Facebook, which were helpful by the way, um, is kind of full intervention or comfort care and it kind of makes it sound like these two paths that you have to choose, which just seems impossible for parents. The decisions that we had to face, um, mainly for when our son was born, they couldn’t do anything in utero, but when our son was born, what decisions we needed to make based off what we were seeing in the ultrasound.

Speaker 3:        And um, I would just say to moms, do your research and, and talk to your doctors. It’s not as cut and dry as two paths. You don’t have to just choose comfort care and you don’t have to just choose full intervention. If you can find a medical team that will kind of help you make a plan, but hold it very loosely. Um, it gives this peace, but it also gives room to change your mind. And I think that was ultimately what we needed. Uh, we wanted to have a plan to feel prepared and for my processing, it was how I parented my son Sawyer. Um, I didn’t get to spend time with him outside of the womb and so I did my best to parent him by making the best decisions that I could at the time. And having a team of people that lets you change your mind and follow your gut was a godsend.

Speaker 3:        How would you recommend somebody finding care like that? Or if there’s a woman listening who’s in a situation where she doesn’t feel that she’s getting that kind of care, what would you, what would you say to her? I would say travel. How far you need to travel. It’s worth it. We were very blessed that the Lord happened to move us 45 minutes from exactly the hospital we needed to be at. Um, I do not think that was coincidence at all because where we lived previously did not have the resources that we had. Now there’s a lot of trisomy groups on Facebook and you can search, you can ask other parents. I found, um, even though we, we have the recommendations to go to you of them, as soon as I knew that that’s where we were headed, I got on that Facebook group and asked if anyone else had been at U of M. and countless stories came in from parents, just real life stories from parent to parent of how they were taken care of and how their child was treated. Hmm. So like I said, the internet then and I could be a really great thing. Um, I would just get on those groups and ask. Yeah. I think that’s really helpful.

Speaker 1:        You mentioned that the first doctor said to stay away from Google, but that you found it really helpful. What about Google? So hopeful cause I can, I could see both sides of why that would be dangerous to our emotional wellbeing and why it could also be helpful. So what made it helpful to you?

Speaker 3:        I hope that people don’t have the experience that we had. Um, with my OB, the way he, the way that he explained it to us in that initial conversation was that our son would only have physical abnormalities that cognitively he would be fine and so we’d be dealing more with handicaps and that type of issue. And then he told us not to go online because of the pictures because with cleft lip and cleft palate and um, sometimes with the eyes, I mean he, he just made it sound horrifying. Uh, my personality is I, I like more knowledge. Um, but I’m also glad that we got in the car and Google because they only realize the severity of the situation. It was not, it was not just physical abnormalities or deformities. It, it had to do with, um, his brain and his heart as well and his life expectancy. So if we had left that appointment and not Googled, I feel like the next appointment we would have been really blindsided.

Speaker 1:        Yeah. That, that makes sense. That makes sense. For sure.

Speaker 3:        And I will say that the pictures, I think I’m glad we looked at pictures, um, because it wasn’t as scary. And I think my son is beautiful and perfect. So yes,

Speaker 4:        it is. It is interesting the perspective on things like that. I mean, part of that is we live in a world that really esteems perfection and things looking a certain way and example thinking a certain way and we value life when it meets a certain standard. And so I’m not saying that that’s what the doctor was doing, but your son was beautiful. So thank you. Tell me what it was like for, for your family to walk through this with you. You mentioned having some thoughts about family and friends grieving alongside. How did those around you respond to the diagnosis?

Speaker 3:        This is the part that was really hard in my journey through this pregnancy. I count myself as a realist. Um, and not to say that I don’t think that God works miracles every day, but I am the type that I will pray for one, but I will also prepare myself for the worst. And when I was angry and when my husband was angry, I feel like our family really wanted to, um, push for miracles and they just wanted to keep everything lighthearted and positive. And I think that that’s really hard when you’re the one going to the appointments, you’re the one seeing the ultrasounds, you’re the one talking to the medical professionals. Um, and they’re not there. They’re not in those rooms. And it’s finding that balance of allowing them to process the way they need to because they’re walking through it too. It’s different, but they’re doing it too.

Speaker 3:        Um, but also allowing yourself to process in grieves a way that you need to. And our whole pregnancy is what’s called anticipatory grief. We were grieving the life that we thought we would have with our son. Um, we did not know how long he’d be around or what birth would look like or anything in those days following. But we did know that we were not going to have this lifetime with him that we thought we would. Um, and I think it’s just being really honest with your family members and telling them, I respect you. I love you and you need to process the way that you need to process. But I, I also need to process the way that I need to process. And sometimes your language isn’t helpful and keeping those lines of communication open. And we had to have several conversations personally myself. I had to have several conversations of just, you know, reassuring family members. I have hope, but this also is really hard and sometimes your words are not helpful and it’s not that I don’t want to talk about it, it’s just can we change the language in our conversation?

Speaker 4:        Yeah, I think that’s a, a mature response to those hard moments. Did you ever consider, it’s interesting because you said they weren’t the ones having to go to the appointments or see the ultrasound. And so w I wonder, do you think it would have been helpful to have ever brought along some of those close family members?

Speaker 3:        In our case it made it a little diff difficult since we had moved and most of our family was in Virginia. But, um, I did have my mom come to, um, one of the appointments when she was visiting, um, for that reason. And I, I think it, it did help. Um, but I also recognize that everyone’s personalities are different. Um, and I’m an Enneagram junkie and so I realized that everyone looks at life a little bit differently. And, um, just because some people are being positive didn’t take away. And just because I was being real, it didn’t take away. So I would say that yes, that appointment helped and we tried to be as honest and open about each appointment and give all the details. Um, but I think it’s gotta be hard for parents watching their kids go through that, you know, I can understand wanting to, to stay positive.

Speaker 4:        Yeah. And it, it, it does make sense. And I think, I think your responses is a gracious one of, I understand that we’re all processing through this differently. I also think that it’s really helpful to have those conversations though. Like maybe this saying this thing you’re doing, this thing isn’t, isn’t as helpful as maybe you think it is. And so having the gumption to have those conversations, even though it’s just like an added layer of grief and loss because you’re having to have difficult conversations about things that you would just rather not have to talk about. But I do think that in the long run it’s helpful and relationships will grow as a result. Um, but yeah, that is hard. And like you said, I think it’s gotta be incredibly difficult for a parent to watch their child walk through this kind of pain.

Speaker 3:        And you want to, I mean, you want to be able to have the conversation. I think that that was what was important to me and my husband is let’s, let’s figure out how we can have productive and encouraging conversations with our family members and still be able to talk about it. Because the last thing I wanted to do is not talk about my son and not talk about what was going on. So it was a more, it was more important to push through the awkward for a few minutes. And you know, there were reminders too, and I just had to say like, I know that’s really helpful and encouraging for you to hear and it’s just not for me to hear right now. Um, and then we’d be able to move on.

Speaker 4:        Yeah. Were there any resources that were helpful to you or resources that you wish you had known about sooner for navigating those decisions?

Speaker 3:        One, the one thing that was amazing is that our hospital had a palliative care team that would walk us through literally every scenario and not only help us make decisions, but also provide appointments for different specialists if we needed to kind of talk things out. And we were able to talk to a neonatologist and they were just great at helping us think of every little thing. Another thing that was really helpful is I did not realize that there are bereavement doulas. And so I had a friend who’s a doula recommend the website’s still birthday. And through that I got connected to a bereavement doula who was amazing. Um, she not only had additional training in stillbirths or bereavement, but she also was a mother who had lost two children as well. And, um, we connected immediately and she helps me in the months leading up and uh, we’re still in contact and she was a great resource.

Speaker 3:        That’s amazing. I’ve never, I that wouldn’t even, this is why this resource is so helpful because I’m in this all day, every day. This is what I do. And I had no idea that that was a thing. So yes, that is super, super helpful. So I w I will link to that resource in the show notes for this episode. It was great because when I, when the hospital gave us a list of doulas, I started contacting them and no one really had experience with our type of case, which I don’t expect a lot of people to try. So me 13 is pretty rare, although once you join these Facebook groups, it doesn’t feel as rare. But yeah, I did. I kept talking to them and I was always really honest. I just said, you know, I just don’t want to have to educate like in the middle of labor and trying to balance all of these emotions and decisions.

Speaker 3:        I really just need someone in my corner who unders at least understands the gist of the scenario. Um, and I just couldn’t really find anyone. So this was a huge godsend, huge godsend. And she was able to not only walk us through different hospital options or resources, but, uh, she gave us the idea of making Sawyer’s birth, like having a, a birthday celebration that our son deacon could be involved in. And so, you know, deacon is making pictures and crafts while I’m in labor and so he’s able to be a part of it. And we had a birthday cake and those little things that I, I wouldn’t have thought of and she was able to help us make a memory and that ended up itself is worth more than gold. It’s nice to have the support when you’re making the decisions. But all in all, you know, I remember the birth in the moments after because we took that time and because she helped us create a moment and she even, um, she helped us find a photographer too. We had some, we were gonna use, now I lay me down to sleep and then we were going to use a family member and the way everything happened, it all got jumbled up. Um, so she was able to secure us a photographer last minute too, which was great. That’s just really amazing. Um, I am personally grateful to this woman for you, so she’s fantastic. If, if somebody is at a hospital that isn’t maybe as amazing as far as resources go as the hospital you were at, do you know what,

Speaker 4:        what a mom would need to do to find that care?

Speaker 3:        I do know that it is spreading. Um, a lot of the educational hospitals, if they have, if, if it’s in their state, I mean U of M is a huge educational hospital. A lot of them will have them. Part of our care team was the hospital’s social worker. So most hospitals have a social worker and I would encourage that mom to get in contact with the social worker because that person should at least have some resources. If they don’t do anything on site, they should be able to point you to where you can go in the community. And also these bereavement tool is they know where to go as well. And for my understanding, bereavement doulas are on the up and up as well and so there should be at least one in each state.

Speaker 4:        That’s really helpful. I appreciate that cause I just, I know that the internet reaches farther than some of our, you know, there’s not everyone listening is going to be in a city or have access to some of these things and so I’m grateful for that.

Speaker 3:        There’s also the book a gift of time, which I are actually our genetics counselor at the hospital gave it to us at our first meeting and I really appreciated that book because it went down all the different paths. It’s stories of families and how they handled diagnosis in different ways. Which I loved it. Um, there were other books that I read which were really encouraging and helpful, but it’s usually only one person’s story and how they chose to do things. Um, I really liked that this book offered different scenarios and I think that would be really helpful too if they don’t have access to palliative care because it, it kind of shows you glimpses of stories of people who chose comfort care or, um, more interventions or just how they processed and went through it too.

Speaker 4:        That sounds great. And again, I’ll link all of these resources in the show notes for this episode. Looking back, what, what do you wish you had known about carrying a baby with a terminal diagnosis to term? Is there anything that you wish you would’ve known going into it? I’m sure all the things,

Speaker 3:        um, I could not fathom the joy that would come from it and I’m not sure. I mean with our story, it’s a little twofold. I, I really enjoyed pregnancy and savored it because I had prayed for it for so long. But, um, we also really enjoyed pregnancy because we knew it was the ti, the guaranteed time we had with our son. Um, the longer that he was in my body or for as long as he was in my body, he was in no pain. He was safe, he was warm. And so I think I slowed down and savored moments more than I would have if our son did not have the diagnosis that he had. I know that a lot of moms are anxious and anticipate that day where they can meet their child, but honestly, I was just grateful for every day that he was still inside and I didn’t, I didn’t know that I could enjoy it as much. When you hear a terminal diagnosis and you think about all the months that you still have left to go, um, it can seem daunting or ominous, but it really wasn’t. It was really joyful. Um, and I, I really enjoyed being pregnant. I really enjoyed carrying my son.

Speaker 4:        Wow, that’s such a beautiful answer. I love that you said I slowed down and savored more than I would have if I had not had this diagnosis. And I think that is a really encouraging, hopeful response to a mom who’s listening who might be walking this road.

Speaker 3:        And it’s odd how much joy you can find in it. I remember, I mean, I can’t get into this whole thing. It would take forever, but one of the reasons that labor started and was induced was that, uh, his movements started to decrease. And I just remember sitting in triage in the hospital and telling my husband like, I didn’t, I didn’t know that that was the last kick I was going to feel like I, I, I wish I could go back and live in that moment just a little while longer because I had no idea it would be my last. And, um, a few hours later he kicked again. And I’m telling you, it was like Christmas morning, my face lit up and the tears started streaming and I told my husband he kicked, he kicked. And I’m going to sit here and savor this and enjoy it because I don’t know if it’s my last. And I was just very thankful that the Lord allowed me to experience that and be in that moment one more time.

Speaker 4:        Yeah. That’s so beautiful. So beautiful. Tell me how you prepared for his birth.

Speaker 3:        Oh man, I am a, I am a prepper. So I think I planned things to the point where I made everyone crazy. Um, but again, it was just my way of parenting and trying to have a little bit probably of control in a situation that seems so out of control. The birthday party was one area that we planned and prepared and I’m really thankful for Jamie, my doula and her help with that. Um, we also informed our family of expectations. I think a lot of miscommunication and heartache in these scenarios that can happen between loved ones is, um, just lack of communication. And so we were pretty detailed in, okay, when Sawyer comes, this is what want it to look like. And you know, we want our, we want to spend time with him first, just the two of us, and then we would like to introduce him to deacon, our toddler and kind of where it went from there.

Speaker 3:        But we also caveated it with, we have no idea how we’re going to feel in the moment. Like we’re making these plans and here are our expectations. So you kind of know what to do and where to be at what time. Um, but also realize that we’ve never gone through this before and we could throw a totally out the window and call and just tell everyone to come. And honestly that’s what happened. I envisioned kind of taking different family members, kind of more slow paced, one at a time, bringing them into the room. And ultimately, once he was here, I was so excited that after he spent time with our son, deacon, we invited everyone in the room. I mean there were a ton of people in there and, um, it just felt like a birthday celebration and, um, so and just including them in the process and, and telling them that you’re giving yourself grace and they need to give you grace too.

Speaker 3:        And there’s grace for them as well. Like, we can plan this to the nth degree, but we’ve all never walked through this before. And so it all might go out the window and we’re just going to have to go along for the ride. Yeah. I love that communicating expectations is so helpful all the time. But especially amidst a situation like this. And then I would say even following, so amidst grief, communicating expectations or just communicating in general is just really, really helpful. I love that. Is there anything that you looking back would have done differently? Not to, not to like make you feel like there’s no like place for regret, but for somebody listening who’s making those plans, is there anything that you would kind of advise them on or counsel them with? One thing that, um, my stepmother actually told me, which kept ringing in my ears so that there was no from choice.

Speaker 3:        I was really nervous as time grew closer to when he would be born, about making the right decisions for him and what I could live with, you know, and um, she just kept saying over and over there, there’s no wrong choice. Like God has, you know, his moments in his days planned and you can’t do anything to drastically change that. Um, which was really comforting. And then one moment that I wish I had lingered in, um, because I mean, and some moms might not know if this is going to happen, but because our son was still born when they first put him on my chest, that was the only time I felt him warm. And the times after that, he was in a cuddle cot, which I am so grateful for because it allowed us to more time with him. Um, and you know, keep his body from naturally progressing.

Speaker 3:        Um, but I’m, I miss those moments. Those are the moments that I wish I would have lingered a little longer. And it, it was just out of excitement in the moment, um, wanting to do the next thing and have my husband, you know, cut the umbilical cord and bathe him and introduce him to his big brother. And so the motives were not wrong. Um, but I, I did not realize that that would be the last time I felt him warm and I’m, I’m so glad I got to snuggle them when he was cold. But it’s, it’s just a different feeling.

Speaker 4:        Yeah. I love that you, you reminded all of us that there’s no wrong choices that God determines our days. Um, because, uh, I think a lot of times we can go into any kind of moment where decisions have to be made or we can look back at decisions we’ve made and feel guilt or shame or regret. And I just am grateful for that reminder that God, God does the determining of those, those things. Um, and I, I’m, I’m grateful for your honesty about, I wish I would’ve just lingered a little bit longer. I’m not sure that there’s any mom who would not say that though, right? Yeah. Even if we had lingered the longest. Yeah, there’s never enough time. Right. Right. So this might sound like a, an odd question, but one question that I actually get often from our audience specifically in regards to a situation like this is what, what should I bring to the hospital? So I’d love to hear from you, what was your like must have item in your hospital bag, not necessarily for labor or delivery, but maybe for your time with him or it could be for the labor and delivery, whatever you want to share. So for my own comfort,

Speaker 3:        I am a huge essential oils fan. So just having my favorite oils was calming it. It made the room feel a little more like home. Um, but as far as for Sawyer, um, I’m really glad that we had things that other families had purchased for him. Sometimes you know, people don’t know what to do when you tell them that your baby isn’t going to be around for a long time. And sometimes those gifts kind of feel silly. But I was really thankful for them in the moment. Um, he had a onesy that had his name on it and that’s what he has pictures in. And we brought some things that were his older brothers, like blankets and toys and hats and socks that we wrapped him in and we just treated him like any other normal newborn baby. He had a little toy too that hadn’t moon and stars because that’s what his nursery would have been in. And just little things like that that I’m glad we had and I’m glad I still have because they still smell like him. And that’s something I, I cherish right now, especially in the first few weeks afterwards.

Speaker 4:        I love that you’ve told us a little bit about how you kind of celebrated the day. Will you tell us about the day that he was born?

Speaker 3:        Oh, the day that he was born, there was quite a few days and hours than pain, laid enough to it. Um, in my younger years I dreamt about birth and, and doing a home birth and all of those things. And, um, so when we found out his diagnosis, I was sad, you know, for many reasons, but part of it is, okay, now it’s guaranteed a hospital birth. And I kind of had some feelings and assumptions going into that. And, um, our medical team was so amazing. Our attending doctor and our resident, or the kindest, sweetest people I’ve ever met. Um, and they made the room really peaceful for us. He was born with the sun shining in the room at one 55. It, it was quiet. Uh, there was not any extra staff that didn’t need to be in there. Um, and even our attending doctor took, um, a minute in between contractions and said, you know, I don’t usually do this, but I really feel like we should just say what this moment means to us right now. And it was so beautiful and I went into the whole process fearful that I wouldn’t have the peaceful and you know, warm and inviting bursts that I wanted to bring my son into the world like I wanted to. And God gave me exactly that in a hospital room, a busy, ginormous hospital. Um, but you could hear a pin drop. It was, it was so sweet and I’m so thankful for those moments that were the exact opposite of all my fears.

Speaker 4:        [inaudible] that’s so amazing. I’m so grateful that God, God did that for you in that really sweet, special way. It was a gift. Yeah. So I know that your grief and losing sillier is very recent. This isn’t, we’re not years down the journey here. Um, but even over the last few weeks and, and since even those initial days of the diagnosis and all the moments in between, how do you feel like his life has changed you? How do you see the now? Is it different? Do you feel like you’ve grown in certain ways? Tell us about that.

Speaker 3:        Who? This boy, uh, he’s taught me more in the past eight months than probably have learned in my whole life. Um, I’ve really seen and felt God’s goodness despite living in a broken and chaotic world. He was, Sawyer was able to show me that, that God is, he is good. I think I knew that cognitively. But, um, I really learned that through this whole process. Um, which is ironic because here we are, you know, eight years of infertility and then we have Sawyer and we don’t get to spend time with him on earth. But, um, God showed me his goodness and his mercy through years life I was able to enjoy things that I never thought I’d be able to enjoy. Pregnancy being in a labor and delivery room, these were sacred moments for me and I saw the gift of, of God through that. And um, also that we don’t specifically me, I don’t need to understand everything to realize that God is good and he is merciful and he loves his children. Well, I don’t have to try to make sense of why this happened. I can still wrestle with it. Absolutely. But at the end of the day, um, not everything is black and white and I’m learning to be really comfortable in shades of gray.

Speaker 4:        What a testimony this baby boy’s life has. That’s just the most encouraging thing that I might hear all day. So I’m grateful for him and the word that God did through him. And in you and in the lives of the women who will listen to this podcast because of those, those encouraging words as we finish up our time together, what’s one kind of final encouragement that you would give to a mom who might’ve just received a similar diagnosis for her baby?

Speaker 3:        You know, I was really afraid of what this would do to our marriage and throughout the whole process, making a plan, speaking with palliative care, speaking with different specialists and doctors. I had some concerns and reservations and there were areas that my husband was really firm and confident in. And um, I think going into this, I assumed that we had to be on the same page at all times for us to, you know, be a unit and be a team and get through this together. And, um, I learned that we, we really don’t, I can have doubts and he can be confident and that’s okay. And we can still be on the same team even if our thought processes are not the same in the moment. Um, and just allowing each other to have the space to get to where they need to be on their own time and not just with grief, but with making decisions for our son.

Speaker 3:        And ultimately we didn’t really have to make any, um, because the Lord was merciful and you know, Sawyer didn’t suffer and he was with Jesus before we got to meet him. But you know, even in the days following, there were some little moments where I’m like, ah, should I have done this? And you know, and my husband, Jesse just allows me to, to get to the truth however way I need to, and he can still be confident or he can be wavering and we don’t have to be on the same page every step of the way. And learning that by giving each other grace and space and allowing us to talk freely and openly, that’s what makes us on the same team. That’s what makes us a stronger unit, not because we have the same thoughts or decisions or ideals. It’s just allowing each other the time and space that we need.

Speaker 4:        I love that. I think that’s really helpful. Wisdom for anyone listening. That’s really helpful.

Speaker 3:        Oh my goodness. It has been a pleasure talking to you today. Thank you so much for being here today, Brook. Thank you. I really appreciate getting to share Sawyer story and our journey.

Speaker 1:        Yeah, it’s been a joy. And listeners, I’m so grateful that you joined us today and I pray that this episode blessed you and reminded you that you are never alone in this journey and that you are more loved than you could ever imagine.

Speaker 5:        Until next time.

Speaker 1:        Friend, thank you so much for being here and for tuning in to the joyful morning podcast. If this is your first time listening and you’re new to the joyful morning, head over to the morning.com there are so many helpful resources there that I’m sure will bless you. And as always, if you loved this episode, let us know by leaving your review. Don’t forget to click subscribe so you never miss an episode. And lastly, and most importantly, if you feel alone in your grief, come join our free online community by going to the joyful mourning community.com. That’s the joyful mourning community. [inaudible] dot com I’ll see you there.


community for women who have experienced pregnancy or infant loss | themorning.com/community

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