Choosing to Love and Fight Through The Pain After a Terminal Diagnosis | Episode 005 with Special Guest Katelyn James Alsop | A podcast for women who have experienced miscarriage, stillbirth or infant loss.

In today’s episode I have the privilege of talking with Katelyn James Alsop. Listen in as Katelyn shares the story of her son James and the reality of carrying a baby with a terminal diagnosis. Her wisdom and encouragement for women walking through a similar reality is freeing and incredibly helpful, I hope it blesses you today.

 

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MEET KATELYN

Choosing to Love and Fight Through The Pain After a Terminal Diagnosis | Episode 005 with Special Guest Katelyn James Alsop | A podcast for women who have experienced miscarriage, stillbirth or infant loss.Hi! I’m Katelyn and I’m a wedding photographer and educator based out of Richmond, Virginia! I’m married to my high school sweetheart and we have a baby girl named Evy and a sweet baby in heaven named James. Before babies, we ran a demanding business and shot almost 45 weddings a year. We have since scaled back to 10-12 weddings annually and love running our online education business!


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Ashlee:                                      00:00:00               Hello friends and welcome to this week’s episode of the Joyful mourning. This week’s guest is a sweet friend who’s endured the unthinkable and she has done so with a remarkable amount of hope and tender, authentic authenticity of the reality that exists between joy and simultaneous suffering. I am so honored to welcome my friend Katelyn Alsop to the Joyful Mourning Podcast. Hi Katelyn. Thanks for having me. Thank you so much for joining me here. I’m so grateful and I’m so grateful that we get to talk about, , your precious son and , what it looks like to find joy in it’s suffering and I’m just so many things, but before we get started in case there’s somebody who might not know who you are, would you just tell us a little bit about who you are? So what do you spend your days doing?

Katelyn:                                    00:00:57               , that’s a good question. So I am 30 years old. I am a wedding photographer and an educator and I would say my life, like what I spend my days doing is 90 percent educating and 10 percent photographing weddings, , which is a big shift from what you know, life used to look like. But I’m, I’m married to my high school sweetheart. Michael and I have been together since I was 15, , and we’ve been married for almost eight years this fall and we have a little girl named evie and , and we work in business together and so, , life running a business from your home together with a, like 18 months old. , she’s not a, I don’t know why I said that. She was 17 months old, whatever. She’s, she’s crazy. She’s crazy phase and , and so life is full and it’s exciting and we’re just, , we’re really thankful for our jobs in the season because it’s allowed a lot of flexibility. So yeah, and we’re based in like, outside of Richmond, Virginia. So we’re an, we’re an east coast family and we love it here.

Ashlee:                                      00:02:02               I think that’s a great intro.

Ashlee:                                      00:02:22               And I loved what you said at the end that, , that you were really grateful for the jobs that you have in this season. And I actually, I want to get back there, in just a little bit, but before we get there, I was wondering if you would share just a little bit about your own experience with suffering and with loss and specifically would you share with us your son James and his story?

Katelyn:                                    00:02:48               Yes. , so five weeks ago yesterday actually, I , delivered James and I was 31 pregnant with him, , and he passed away that day and , what happened with his story is, so February twelfth was my 20 week ultrasound and we went into that ultrasound. We took every with us because we wanted her to be able to see the ultrasound, like because that’s the first ultrasound that looks like really looks like a baby. , and she had just started like saying words and we’re like, okay, we’re going to show her the baby. We took her in there and it, the ultrasound tech just took a while and then she left and then she was gone for awhile and she came back and decided to check his heart one more time. And when she left again, I looked at Michael, like, is something, do you think something’s wrong?

Katelyn:                                    00:03:44               And he was like, no, no, no, nothing’s wrong, you know, I, I tend to worry a little bit too much. And so, , but something was really wrong. There were a lot of things that were abnormal that we couldn’t see with our eyes. We, we’d be able to see now, like we looked at anyone’s ultrasound and saw, you know, an ultrasound that looked like ours. We’d be able to spot hydrops, which is a multiple areas of fluid in the baby’s body, a high growth mo, which is fluid on the back of the head and then a heart defect. And those are the three main things. And then, , we started noticing other things like we can’t really see his stomach and , we’re not sure if his stomach is even connected to his esophagus and something, something had to be causing all these things to happen.

Katelyn:                                    00:04:30               And so we had an amniocentesis which allows them to take skin cells from his fluid that’s floating around, you know, like babies shed skin cells. And so evidently you can test those skin cells and be tested for a ton of different things. And it came back that he had Down Syndrome, which was actually we came to find out later a blessing because having Down’s explained everything, like every single complication could be linked back to the fact that he had a chromosomal abnormality, which means that this was all random. It wasn’t like we carried this gene and we were going to have multiple pregnancies in the future like this. , but you know, nothing changed how hard that 20 week appointment was. And we decided, you know, we went straight from there to a genetic counseling meeting, which was really hard because we didn’t even know, you know, what was exactly wrong.

Katelyn:                                    00:05:27               And they were already giving us options for termination, which is crazy to me, , but we were really respected by our medical team and we decided to carry him and I carried him for 11 weeks even though they said, you know, he’s the most, our doctor’s been doing this for 20 years and she said, I’ve never seen a baby with hydrops this bad, so he’s probably not gonna ever see the third trimester, he’s definitely not going to live more than like four to five weeks and he lived for 11 weeks. So that, that in a nutshell is kind of a medical, like step by step, this is what it felt like to walk through that appointment and then make that decision and then carry him. But there’s a lot more that goes to that story in here. We’ll talk about it. But that’s kind of the nutshell version of, of what we experienced.

Ashlee:                                      00:06:17               Wow. I think anyone that’s listening would probably understand that. Yeah, those are the, the medical step-by-step in the, you know, the, just explaining what it was like, , from that standpoint, for that viewpoint. But I’m sure there was so much more that went into those, those early moments. And then those weeks following.

Katelyn:                                    00:06:42               Yes. Well, I was, I was just gonna say, , that something that meant a lot to us was we came back from that ultrasound and we called Michael’s family. We called my family and everyone just met at our house and we had our own little gender reveal because we didn’t know if it was a boy or girl and we decided we needed to know, like if we were praying for a little boy or little girl and we as a family just prayed over him and , you know, we, at that point we didn’t know if he was going to survive. It wasn’t a guaranteed like, oh, he’s not going to be able to survive. We didn’t really know. We just knew I’m either, we’re grieving the loss of a baby baby or really grieving the loss of a normal life for us and our baby because if he did survive it would be, it wouldn’t be down syndrome, like, you know, high functioning. It would be down syndrome would be the least of his worries. It would be extreme complications, probably a feeding tube. It would, I don’t even know if he would be able, if you would have been able to breathe on his own. And so we just from the very beginning, like just had to start trusting the Lord in a way that we never had before. , so, so yeah, that,

Ashlee:                                      00:08:06               tell me what that was like with your, with your family there that day. And , what did that look like? Did you guys pray? Did you open scripture? Did you just sit in quiet together? You know, I, I’m asking that, I know that sounds like such a strange question, but I know for, for us, , when we left the hospital, , with, you know, without arson, , and, and are very different circstances but still your grief, you’re grieving and it’s a new, it’s a very new grief and I just remember leaving the hospital and we met together all of our family and our friends met together at my in laws house and we just sat in silence. There was just this because there was nothing that anyone could say in that moment. I’m right. And then someone opened the Bible and just started reading psalms and they just pass the Bible around the room from person to person just reading through the psalms because there was nothing else to say for us in that moment. There was no more, there was no hope that this could even work out the way we would have wanted it to in that moment. Right,

New Speaker:                        00:09:18               right. Yeah. I mean, I think for us there was still this, , there was a sense of hope still because, you know, it was day one. , it was 20 weeks, maybe the hydrops would go away, maybe the heart defect, maybe you could have open heart surgery. , so I think for us there’s still hope and there was still this idea of, you know, maybe maybe this isn’t it, like maybe something’s going to change and you know, but overall we knew, you know, no matter what, this is still, it’s not what anybody would want. This is, this is devastating. And so we kind of all, , everything was just quieter. Our House is normally filled with a lot of people and it’s loud. It was just a lot quieter. We put my sister’s baby and our baby down for nap and we just sat in the living room and kind of all leaned around me and Michael and we opened.

New Speaker:                        00:10:16               Actually we let Evy get the gender out of the envelope. First we found out he was a boy. And that was hard because, I don’t know, there’s just something about when you have a little girl and then it’s your first boy that I don’t know. Michael and I both got really upset when we found out it was a boy, it was just hard because that had been what we really wanted a boy and , so then we, each family member have prayed over us and , and we, you know, lots of sobbing, lots of tears. But then we left and we were just, I mean honestly, until we, and this point, we didn’t even know he had downs. We just knew there’s always little things that are wrong and not little things, but you know, when you have a list of like 50 things you can be like, oh, there’s a million things wrong.

New Speaker:                        00:11:07               , and so we, yeah, we left. I feel like that moment just hopeful that somebody was going to change. And then as the weeks went on it became really obvious at every, every ultrasound that it wasn’t getting better and it’s hard. But like we went two weeks without ultrasound after finding out he had downs and I specifically prayed, I begged God to show us how this was going, like, what direction it was going. Because the whole back and forth of am I losing a baby or do I have a baby that’s going to suffer through his whole life? I don’t even know what I’m sobbing about right now. I don’t even know what’s going to happen. , and he gave us that. He, he allowed us to see like, you know what, there’s, there’s nothing changing with his body. Yes, he’s continuing. He’s continuing to breathe.

New Speaker:                        00:12:00               He’s living. But , but your baby, I mean the doctors just kept saying like, he, he can’t survive outside of you. And so that allowed me and my goal to, to grieve losing him, but also to know like, well, he’s still here now and, and we’re going to love him while he’s inside of me. And so that’s when we decided to name him and to take him to New York. And he went to Broadway shows with us. We just started doing things to celebrate the Ta, the only time we had with him. And instead of just preparing for a child that was going to have about a dozen severe disabilities, , the Lord gave us like, you know, let’s celebrate him now because this is all you’re going to have. And, and that was a huge gift to us. , even though it’s hard to say that, I just, I’m so glad that I can go through the 11 weeks of like, is he gonna live? Is he not? I don’t know because that would have been, I think so much harder on us, , in some ways. So yeah. So long winded response to we prayed together and then we left with hope that something was going to change even though it didn’t.

Ashlee:                                      00:13:10               Yeah, I love that you and Michael chose to celebrate his life. I think that that is just really special and really sweet. And I remember reading a book or a blog, I think a blog posts maybe by Angie Smith who said something very similar about her daughter Audrey, and that she was just going to show her as much of the world as she could and teach her all the things that she wouldn’t get to teach her here. And I feel like I remember a story of her teaching her or, you know, talking to her baby that’s in her womb about how to do the laundry or something like that. And I just remember how precious you know, to, for us to value life in that way, to say, well, God has given you to me for this amount of time and I’m going to enjoy it and treasure it because, you know, we say that, but I can only imagine how difficult that was for you to know that this isn’t going to end the way that we would want it to. , but still choosing to dive in and say, but I’m going to love you with all of my heart right now.

New Speaker:                        00:14:27               Yeah. It’s like, it is, , is so not the way it should be that it’s like hard to even describe like, , like I remember reading because I love Angie Smith. I read her book and that was, you know, I will carry you. That book was a huge. I read it within the first two weeks of finding out that this was our journey and it was a huge help to me. And , and I also realized reading that book that there’s some things that she did in that other women did that I for some reason had a hard time doing like, you know, I never talked to James about the laundry or about little everyday things and I would just. But I would put, I would talk, I would, I don’t know, I think I had a hard time going back and forth from like your be in the shower one day, like on the floor sobbing and like praying for God to take this baby because he wasn’t getting better. He was suffering in my eye. I felt like he was suffering. , and then the very next hour like I was alice shower, laying in bed, like holding my stomach and being like, you know, I love you, you know, and

New Speaker:                        00:15:42               it’s just so it’s like such a controversial, like one minute you feel this way and the next minute you feel totally different. And so for me, , it was a battle sometimes to choose to treat him like that even though, , I just, I did love him. It was so risky. It’s like being a parent in general, like, you know, when you have a child, it’s like you were risking this great love that could be taken away from you and to be pregnant with a baby that you know is going to be, you know, it sounds harsh but like taken away from you. That’s what it felt like. ,

New Speaker:                        00:16:21               it is really a decision to choose to love. But then as a mom you don’t have any other choice. Like I’m carrying around a baby just like I carried around n and I could feel him move around and he was my child. He’s my second child and I have no choice but to just love him and I couldn’t help but love him. But then there’s this fear that creeps in, like, don’t get attached Katelyn, because he’s not coming home with you. This, this baby’s not going to be a part of your family in everyday life ever. He’s never gonna play in the backyard with him. , so it’s a battle and I think, I’m sure Angie would say the same, like it’s hard to sometimes choose, like to love with a bay, you know, not even, I guess it’s unconditional, like I’m just going to love you even though I know I don’t get to keep you.

New Speaker:                        00:17:14               That was a daily decision and sometimes it felt like it was. I didn’t even have to try because I’m this child’s mom. Of course I’m going to love him. But then there’s some days where there was a battle in my mind of like, oh my gosh, Katelyn, don’t let yourself get attached. You can’t get attached to him. You know, you can’t let yourself love him. Like he’s a normal baby because he’s not. He’s not going to live. And , I think the Lord was really gracious because in those moments where I felt like, oh my gosh, I can’t fall in love with this baby, he still allowed me to. And that was bittersweet, but it was, it was more sweet than bitter. , and I’m thankful for that. I’m thankful that I didn’t go through this pregnancy and feel completely detached and not connected to him because that was not the case. But sometimes it was hard to allow myself to do that because it was, I was so full of fear some days.

Ashlee:                                      00:18:10               Yeah. I think it’s really, I think what you said about parenting in general is that decision to love unabashedly knowing that they’re not ours ultimately. Right. And so, and we don’t really hold that much control, we think we do, but in those reality, being a, being exposed to this reality of suffering just reminds us that we just actually don’t have control over life and death. And I think God was gracious to help you and give you the, the ability to love him to the best of your ability while he was here. I think that that was, I think you said that, well God gave you that gift because it isn’t, it isn’t natural for, I mean as a mother, it’s natural to love our children, but it also, there’s something in us that doesn’t, when we know we’re going to be hurt, we’re not. It’s not natural for us to run towards pain and so.

New Speaker:                        00:19:11               Right, exactly. And that’s how it felt. It felt like I’m, I’m making this more painful for myself, but now that I’m on the other side of it and he delivered him and I, we met him and I cannot tell you how, and I’m probably get upset saying this, but I am like, I’m just so thankful that we didn’t treat him any differently and that we chose to fight through the pain and we let ourselves love him. , because when you’re on the other side and your baby’s gone, I have no regrets. Like I don’t, I just, we cherished him and we celebrated his life. Like I remember two days before I knew that I was going to have to be induced, calling our friends who do video and you know, they their videographers and I just, they had asked, you know, do you want any videos in the hospital?

New Speaker:                        00:20:05               And the pain side of me said, oh gosh, no, like, I don’t want it to worry about one more thing. I already have too much to think about. I’ve got to go through labor and deliver a baby without a heartbeat. No, I don’t want video. I don’t. And you know, I just, it was too much. But then two days before, like something changed and I was and I called them and I’m like, no, I think, I think we need video. I would love for y’all to be there and I don’t know what gave me that strength, but I look back now and like I saved as much of his life as I could have an we bought outfits for him. You know, we, my mom made a blanket for him, his other grandma, she, Michael’s mom did this beautiful watercolor and , it, everyone just loved him the way that I wanted him to be loved and I wanted him to be treated like he was our second child, not like this sad pregnancy that just, you know, maybe it just didn’t make it. I wanted him to be treated like our second baby and everyone did, including us and I think people take the lead on whatever the parents are doing and I’m thankful that my and I had the strength to love him that way. , because it allowed, you know, it allowed Mike and Bobby, which are Michael’s parents and you know, my appearance. It allowed everybody to, to love him in a way that it was really healing for them too.

Ashlee:                                      00:21:33               So yeah, I’m thinking, I love, I love that you specifically mentioned the grandparents because I think a lot of times there isn’t an outlet for them to grieve and they don’t. They don’t necessarily know how to grieve and they’re watching their son or daughter walk through tremendous pain and they want. There’s just so much that encapsulates that grandparent role and I just love that you, you said specifically that because you guys made a decision about how to love him, well, that allowed the grandparents to have a role in that and for them to also love well and to grieve and to walk alongside this journey with you instead of them not knowing how to help you. I think that’s one of the hardest things about about grief is that we don’t. Sometimes it can be really hard to communicate what we need or we. I think in my case I was.

Ashlee:                                      00:22:38               I’d so much didn’t want to be identified. I didn’t want this new role. I didn’t want to be a mom who had lost a son and so I just didn’t wanna deal with it. I didn’t want to. I didn’t want that to be my new identity or my new. That’s not my identity, but I didn’t want to identify with that person. I just didn’t want it. And so for a long time I just. I just didn’t let myself grieve at all. Which meant that all those people around me, they’re not going to try to bring up things if I’m not giving them the freedom to do that. Also, I don’t know. Does that make sense? Yes.

New Speaker:                        00:23:14               We, and I remember when this was happening, when I was in the midst of, you know, maybe two months in to being pregnant with knowing her diagnosis, the lady who walked through a similar journey emailed me and she said it, it just caught me off guard, but one of her like prayer request for me, she’s like, I’m just gonna I’m going to pray and ask the Lord to give you strength to be able to let those around you grieve. , and to be able to have grace for them and never understood that until probably after was gone.

Katelyn:                                    00:23:46               And , I’m sure like, my mom wouldn’t mind me sharing this, but you know, she grieves differently than me. And I went through, you know, a season where, you know, a week, long period where I’m like, okay, if I’m moving on the no one else can be sadder than me. You know, if I’m not, if I’m at this, you know, a certain level of happiness, everybody else should be at least at that level of happiness or greater because I’m the mom and I’m the one that just, you know, delivered in, lost a baby and so no one’s allowed to be more sad than me and that, that’s not how grief works. So learn that the hard way and I’ve just realized that there’s so much truth to what that woman said, like, you know, my mom’s allowed to have days that are harder than mine. Even. She’s allowed to grieve in a different way.

Katelyn:                                    00:24:33               And , yes, it wasn’t her that lost a baby, but she watched her baby lose a baby and she had to be my strong person to get me through the pregnancy. And now that we were on the other side and I’m healthy and James is in heaven, like there’s people in our lives that are just now starting to grieve. Whereas I started to grieve February twelfth. The day that we found out that this was, you know, are, are devastating news. Whenever that happened, that’s when I started grieving. And so, , I’ve realized in a lot of ways, like even between Michael and I, like you have to let people grieve in a certain way and however you choose to handle grief affects everybody. And , so yeah, there’s, that. You’re so right, that and it’s, it’s definitely a gift to them to be able to allow them to talk about it and not feel nervous that they’re gonna make me cry, you know. , and I think it’s different for everybody because, you know, your story was different that you wanted to, you know, stay away from, you know, accepting that you need a degree for a while. And we, God gave us these three months of like preparing us for the end. And so I know every story is different, but I am thankful that we chose to walk through his story openly because it allows everyone else to feel a part of his story. So,

Ashlee:                                      00:25:58               so yeah. Yeah. I just, I love that. And I don’t think, I don’t think that the way that I handled it was probably the, the best way. And so I think that’s why. So normally I just, I love, I just, I think it’s very helpful for somebody who might be listening who might be just, maybe they just got a, you know, a hard diagnosis, , or they’re just new in this grief and loss journey that inviting people into the grief and allowing them to grieve alongside you. And, and maybe it’s helpful to say, you know, setting the tone for what it will look like to, like you said, to celebrate James his life while he was here. , I just think that that’s helpful to, , like you said with Michael to make an intentional decision to say we’re gonna we’re gonna love him and we’re going to celebrate him while he’s here.

Ashlee:                                      00:26:52               One thing that you, you mentioned was inviting the videographers to come in. I just wanted to get your thoughts. I think one thing that is hard about that and making the decision to have photographs or , you know, I interviewed a friend of mine who is a, she works as a labor and delivery nurse and her specialty is actually to work with families who will have to not have as much time with her babies as they would obviously want to see. , I know and I think she is supernaturally gifted and I’m, I’m so grateful for the work that she does. And she was talking about how she really encourages parents to hold their baby and to take pictures. And she says, even if you don’t look at these pictures for a year or five years or 10 years, there will be a day where you probably will want them.

Ashlee:                                      00:27:43               And I just, you know, I was thinking about why it, why that feels so hard to want to take those photos and to want to take those videos. And I think for me in my experience with dealing with grief, it was that whole denial thing. I just didn’t want to be that. And I’m imagining that that happens to, I’m in this sort of scenario where, you know, maybe you just don’t want to. There’s a part of you that says, I don’t want to remember that much pain. I don’t want to remember this grief. I don’t. Or maybe part of it is in this happened to me in regards to what it would look like to, , celebrate my son’s birthday each year. The first year was the hardest in that. I thought everyone would think that we’re so weird. So like the video or the photos, sometimes it’s almost, you know, our hangup is more. So what do people think of us? Or is this weird? Is this strange to act this way? What do you think is that, did you identify with any of those feelings or is that, was that just me?

New Speaker:                        00:28:49               It wasn’t just you? I think because given my profession, I think I knew the value of photos, but , it’s interesting. I didn’t want to have photos taken of his birth, like me actually giving birth them because I think it’s because of what you said first. I don’t. Why would I want photos of me struggling to push out a baby that’s already dead at? That sounds horrible to me. Why would I? And it’s crazy, but one of my favorite pictures because we ended up, my mom told me, she’s like, Katelyn, I even if you don’t look at him, just have jill, my best friend Joe was in the room, just have joe in the room and she can hide those from you, but you’ll have them and you’ll know like evie had birth photos and so did James and , is so crazy. But like my favorite picture, I’m probably gonna cry, , is like the moment he was laid on my chest and my goal is like leaning over the side of the hospital bed and like kissing my forehead and having that picture just reminds me of what it felt like to be in that moment and before it happened.

New Speaker:                        00:30:00               And when I was envisioning like delivering a baby that wasn’t going to be alive. My thought was, I don’t want to remember how painful that was. Why would I try to capture that? But what no one can even come close to explaining to a mom who has to deliver a baby that’s not alive is that it can be joyful. Like I don’t even know how to describe it. It was like a miracle from the Lord. But like, , we, we were told we weren’t going to be able to see James’s face because he was so swollen and I’m from his condition and own ultrasounds. It was like one to two inches of fluid around its entire head and they told us, you know, you may be able to make out whereas noses, but you need to be prepared, you know, for what you may see.

New Speaker:                        00:30:47               We don’t want that to be shocking, you know, or to Domesa up your birth plan or what, you know, you just need to be prepared. So when he came out and you could see his sweet face, like it was so joyful and it was just. And, and it would have been enjoyable even if it wasn’t that case scenario. But I just remember Michael being like, oh my gosh, Kayla. And you can see his face. And we were both sobbing about how happy we were, we could see his face, whereas I think the rest of the world looks at this photo that I’m talking about and they probably look at it and think they’re sobbing because they lost a baby. But we’re really sobbing because our prayers were answered and we got to see our son. And I’m so thankful I had that. And, and then there is like a, like you said, like I thought about video.

New Speaker:                        00:31:33               Is it weird like to take like a slow pan of like me holding my baby’s hand when he’s not alive? Is that weird? I mean, I don’t know. No one tells you what’s weird or not and because no one, most people don’t live through the situation. And I think I got to a point where I was like, I don’t care. I don’t care what people think or the nurses think. It’s crazy. Like, I know that I’m probably going to want this. And a lot of our decisions about docenting and life had to do with abby because she’s not old enough to understand this. And, , I always get choked up talking about this, but, , I just have this feeling that US explaining to evie when she’s a little girl and older than she is now about her brother and that he’s in heaven and what that means and sharing stories and pictures and videos of him, , that so male that’s going to allow her to grasp the Gospel for the first time. And maybe that’s not how it will happen, but I just have a feeling that the Lord’s going to use his story in a way to allow his sister to understand what Jesus has done for her. And I want to have as many pieces of his story to tell that to her as possible.

Ashlee:                                      00:32:55               So that’s. I love that. I do. I’m praying for that. One of the most unique blessings from suffering a loss of a baby I do think is the ability to communicate to their siblings that about heaven and about eternity, right? , and we get this opportunity to teach our children about it. Just a different side of God. The God that we see in John Chapter Eleven, I think is a John Chapter 11 where Jesus is about to raise Lazarus from the dead, but he cries, he weeps because he, he knows what it is like to suffer. And He, , his heart, it breaks for these two women who are, who are just grieving. And so there is this like beautiful gift that might sound really twisted to somebody who’s listening who hasn’t walked through this. But, , it is a gift to be able to, to teach our children about this side of God, the compassionate, empathetic, , character of God and to teach our children about eternity.

Ashlee:                                      00:34:12               I mean, we, we started talking to our son. I mean, of course he was, he was similar age to evie. So Andrew was 17 months old. He was between 16 and 17 months old. And so he doesn’t remember either and you know, it is a sweet blessing to be able to talk about heaven. And it becomes this like, it’s just really natural. We talk about eternity all the time because that’s where, you know, aiden isn’t heaven. And so, , we’ve never, not, we’ve never, there’s never been a moment where we haven’t talked about those things which can be very hard to talk about if you haven’t, if you don’t really have a reason to talk about death with children, you’re not going to talk about it. That, I mean, I don’t know that I would have, but it becomes this natural bridge and I think you’re right.

Ashlee:                                      00:35:02               I mean that’s, I love that. I think I, I imagine that you are probably right about that, that God’s going to use James’s story to expose her heart to the Gospel and in a way that, you know, wouldn’t have otherwise happened. And so I think that’s really sweet. One thing that you said to in regards to docenting in general or maybe the decisions that you’re making towards the end was that you just came to a point where you just don’t care what people think anymore. I think it took me a long time to get there. It took me a long of really long time to get there. But you said that there’s no, you know, nobody’s telling you what’s weird or not. And I do you feel like at some point you just had to say, I just, I need to make decisions about this, that Michael and I feel are good and. Right, right. And who cares what everybody else thinks? Oh, definitely.

Katelyn:                                    00:36:01               And, and that’s true for every part of this. Like do I take maternity portraits or not? Uh, I don’t really want to, but I’m probably going to want them. Okay, we’re going to do , or , you know, the memorial service, do we have one? Is it a funeral or the memorial? Is it like open to the public or is it invitation only for just our closest friends like cremation or are we going to get a casket and do like all of those decisions? I felt like we eventually got to a point where we’re like, we just needed pray about this together and make decisions together and figuring out what we have most piece about and I’m in Israel decisions that no one should have to make. And it’s easy to, to think about. I remember planning his memorial service and thinking to myself, I would just get so overwhelmed and I just start crying because I’d be like, oh, I shouldn’t have to do this.

Katelyn:                                    00:36:59               Like, this isn’t, this is backwards. This is not supposed to be on my list of to do’s after delivering a baby. I should be at home nursing a baby and getting used to Newton and newborn life and now I’m planning a memorial service for my son. This is so messed up. And then, and then God would just kind of give me glimpses of like how beautiful it could be to celebrate his life with friends and you know, someone would text me and offer it to do something for the service or friends would say they’re willing to do it. Lead worship and like things just started falling into place and it was just this beautiful celebration of his life. And I remember though all those decisions, they just, , I think they’re just amplified and it’s harder to make those decisions because there’s such a weight attached to them because nope. Shouldn’t be having to make them in the first place, you know? Yeah, so

Ashlee:                                      00:37:52               I agree. Do you feel like, , I know one mom said in regards to some of those types of decisions, she said I just finally had to say what will I, if I, if I do this or don’t do this, which one will I have the least amount of regrets with? That’s not the best way to phrase that, but what will I regret? Will I regret not having those maternity photos? Probably. And so she would like, okay. So we had maternity photos and she said that was a helpful way to begin to make those decisions because like you said, it’s not natural for you to be walking through the pain that you’re walking through and having to make the decisions that you were having to make. And so, , I think that, you know, will I regret not those photos? Probably. So let’s have the photos. Yeah. And it’s hard because it’s like, well, you said earlier,

Katelyn:                                    00:38:41               choosing to push into the pain and I think if there’s one thing that Michael Knight, so Michael and I have had a life coach slash marriage counselor for like three years and we totally know why Lord was preparing us to be able to be in this season together. And we, if there’s anything we’ve learned, it’s that like you can choose to let pain transform you or tear you apart and , but if you’re going to let pain transform you, you have to lean into the pain and no one, no han. It has a natural desire to lean into pain that our natural han desires to run from pain. So it just seemed so not natural in any situation to lean into what’s going to be harmful or hurtful to your heart. And. But we realized with James’s story and our experience with being as parents is that the more that we leaned into that and the more that we allow the pain to transform us.

Katelyn:                                    00:39:46               Like I mean we have. Our marriage isn’t probably the healthiest place it’s ever been. And I don’t know how that’s possible, you know, how is that possible when you just lost a baby? But allowing God to transform us through pain has done so much good. And it’s almost, I mean, it’s beautiful, but like I look at, I look at where we are in our marriage and I think our other children, like evie and God willing, our other children, they’re going to see a healthier set of parents because of what we walked through with, with James and his story. , and that’s a gift to my whole family. Like, , but it, but if we had never viewed his story or this season of our life in that way, we would just be in the depths of despair. And we would be, which is Norton. Some days I have that.

Katelyn:                                    00:40:44               Some days I’m in the depths of despair and I’m just crying in my bed and no one can make it better. And that’s just how grief goes. But the majority of our days right now are joyful and we’re in a good place. And it’s hard when you know, you see other people have their babies and you miss yours. , but like I, I’m just, I’m thankful the Lord allowed us to walk through the season of grief the way we did because somehow leaning into pain is making it less painful now. I don’t know if that makes sense,

Ashlee:                                      00:41:20               but. No, I think it, it, it’s really beautiful. I don’t, I don’t know that it has to make sense, right? We always want things to make sense. But God just did a sweet work in your heart and in your lives.

Katelyn:                                    00:41:34               I was curious. I had just a question about marriage and just do you have any like, practical wisdom for a couple who is going to walk through something similar to you and Michael? , yets I think that can be a whole nother podcast because I’m the chapter from Andy Smith’s book that meant so much to us was the chapter that her husband wrote and it gave Michael permission to not feel bad about not being as upset as I was because if you’re in our exact position, you know, it is hard for Michael. It was hard for him to feel attached to James the way that I was and because of that, losing him and if he just couldn’t relate to how much pain I was in because I was getting up every day. I’m not feeling like my days were purposeless that I never felt like it wasn’t worth it, but some days I work, I woke up and I was like, my life is so sad.

Katelyn:                                    00:42:40               I’m a walking contradiction. I’m everyone else in the world looks at me and my pregnant belly and they think that I am growing new life and that is so exciting and I know that I’m getting up every day continually growing a baby that’s going to die and the amount of. I mean, it is just hard to describe how hard that was. And Michael suffered with the idea that, that he wasn’t grieving enough because he didn’t get upset every night like I did. He didn’t weep in bed like I did. He didn’t have meltdowns during the day like I did and it was so helpful for Angie’s husband or write a chapter in her book and explain like it’s okay for the men, the husbands in these situations to not feel the same way as the wife and the wife can’t get mad at the husband for not being as emotionally distraught as she is because it’s just different for them.

Katelyn:                                    00:43:39               And , I think that just gave my goal a lot of freedom to feel the way that he felt. And Michael’s grief is different than mine. , it became more real to him in the hospital. And, and I hope this isn’t, you know, doesn’t cause anybody to, you know, I hope this isn’t an emotional trigger, but you know, when we were really good friends with a funeral home director from back home and he personally came into the room and got james his body and left. , and that was so hard for me and it was extra hard for Michael because I realize like, , before he came, you know, this friend came to, you know, take James Away. We were sitting there in the hospital room and , it was like our last hour with him and I told Michael, I’m like, you need to hold him for this last hour because , you know, I’ve been holding him for seven months and you just met him yesterday and we kept James in the room with us for like 15 to 18 hour.

Katelyn:                                    00:44:44               I don’t remember exactly, but a long time like, , I held him a lot. We took pictures and videos on his first board and then we just basically had 12 hours of just me, Michael and him. And , so I just, I look back to that experience of actually saying bye to his body and knowing we will just never see him again and am realizing like this was, this part was the hardest for Michael, you know, my, my hardest part was carrying him for three months and knowing I’m going to lose him, but letting go of his earthly body after Michael, that’s all he got to see of him. That was hard. So for marriages and couples living through this, I think just the overarching theme of what I just, you know, random rambled on about was , to have grace with each other because it’s going to hit you in different ways and it’s going to be grief is just going to be different and especially when you’re grieving while you’re pregnant. I think that is, it’s just such a hard thing to wrap your mind around. But I grief no matter what is so hard. But for that it’s like this unique thing that it’s hard. It’s just hard as a couple to be on the same page. So again,

Ashlee:                                      00:46:01               I think that’s incredibly helpful. I think that’s incredibly helpful and I don’t, you know, I don’t think we could probably say that enough that in marriages I don’t even know that it’s men and women specifically, but in, in as hanity, we just all grieve differently. And so having grace for your spouse and for your family members and friends and , but especially your spouse. I want to just, I’m going to really quickly just kind of switch gears for a second and I imagine there will be women who listened to this podcast who are in a position where their home full time and that presents its own set of challenges when you’re grieving. But I was curious to hear from you about what it looked like in the midst of the hardest season of your life. , what did work look like if there’s a woman who’s listening to this who has to work or she has her own business? , what, what advice would you give her? What cautions would you give her? Encouragement. I don’t know. Do you have thoughts about that? That.

Katelyn:                                    00:47:02               Yeah, I do. I’m trying to think like, because honestly if, if a woman is in my exact situation, I can’t tell you. I don’t know how to describe. Like I tried so hard to work when I was pregnant and there were days I just couldn’t, I couldn’t make myself do anything. , I would sit in my office and my sister sits next to me and I would literally sit here with my pregnant belly and just stare at my computer screen and not even do anything. And then eventually just start crying and my sister would hear me cry and then she turned it around and we’d talk about it and we cry and then I decided, okay, I am going to go take a nap and then wake up from a nap. And it’s like, well, it’s an hour and a half until dinner. I’m just going to not work until dinner.

Katelyn:                                    00:47:52               And it was this cycle of like, I honestly think I was just trying to survive. Like I, I was, I got to a place where I, I would be so relieved that it was nighttime that I could just go to bed and then I’d wake up in the morning and be distraught. Like I have to do. I have to make it through another day. How am I going to do this? And there were some days where I could get a little bit of work done and that was a distraction. But the only thing that will be a distraction was actually like getting out and shooting, , since I’m a photographer like that sitting in my office with a laptop was not helpful. , so maybe I should have tried like taking my laptop somewhere else, like outside of the house when I couldn’t just, you know, I could just look around and see people doing things maybe at a coffee shop.

Katelyn:                                    00:48:36               I don’t know what my advice would be. I guess it’s just to know that you’re normal if you can’t seem to get anything done because that’s my experience. And I think my encouragement is that you’re not going to stay there. You know, I, when I was in that season of feeling like, oh my gosh, I used to pride myself on my productivity levels, like people learn from me how to run businesses the way I run my business. And here I am sitting at my desk and I can’t even make myself type one email and im going to be like this forever. When you’re in the midst of something like this, you think that this is the rest of your life is like, your life is ruined, like you’re never going to survive or get out of this pit. , and the good news is, is I was out of that pit, you know, three to five weeks after losing him and that won’t be the same for everybody, but it’s someone in my exact story where the grief begins three months before you actually lose your child.

Katelyn:                                    00:49:32               And it’s just this strange scenario. I’m at my, my encouragement to them is that they will be able to be the person that they used to be, not exactly because you’ll, you’re changed forever once this happens to you. But, , I can work now and I still love it. And there was a time where I thought that I wouldn’t be able to. And so I don’t know if that’s encouraging or not, but I can only, you know, I would love to make up that like, oh, here’s some tips for how I just pushed through. But I don’t have any. I just, I, I just had to take a nap

Ashlee:                                      00:50:08               and I, I actually think that that’s more helpful than giving some, like step by step guide because the reality is that no matter what the circstances surrounding someone’s grief is that hearing that it’s okay for you to not be okay and yeah, hearing that it’s okay for you to really lower the expectations for what your new normal during this season of life looks like is okay. Right. And so I actually think that that’s really helpful. , okay,

Katelyn:                                    00:50:39               good. Because I was thinking in my mind like, what can I, what tips can. I don’t have any tips. I didn’t work, I couldn’t work.

Ashlee:                                      00:50:45               Honestly. I think that that’s really freeing to somebody who’s in the midst of this to say, Hey, I’ve got very low expectations for what’s happening, what I’m going to be able to output here. Exactly. You know, I have literally, I have so many questions, but we’re, we, we’re talking,

Katelyn:                                    00:51:06               but I think for three hours we could. Who wants to listen? Everyone. Three hours.

Ashlee:                                      00:51:13               , so I think I want to ask two more questions and then we’ll kind of wrap up. And so my first question is, this podcast is called the joyful morning and , I like to ask all of the guests, what does it mean to them to find joy amidst suffering amidst morning? Because what I don’t want to ever happen is for someone to think that, you know, when you’re in a season of just horrific grief that you’re supposed to walk around, you know, giggling and smiling and I’m, that’s not what it means to find joy amidst morning and mid suffering. , so what do you feel like it means to find joy amid suffering or to find hope amidst suffering?

Speaker 4:                               00:51:13               ,

Katelyn:                                    00:52:04               I kind of knew what you were going to ask. So I’ve been thinking while you were explaining, I was trying to think like, oh gosh, what do I, how would I define that for us? It probably comes down to worship, like,

New Speaker:                        00:52:19               , our marriage counselor was like in this season that you guys are living through. What’s the nber one non negotiable thing that you want to see happen through this season? No matter what, you know, when, when James is delivered, when you’re in the hospital, when you’re planning a memorial service, , you know, all those things, like what do you want to see happen? And we just both said like worship like we want, no matter what happens to us, like if we just want to be able to worship the lord because if we can’t, then like I, I just knew that if we can’t worship, we’re going to lose our joy. And ,

Katelyn:                                    00:52:59               so that was, you know, and for people that are listening to this that are like, but what does that even mean? I guess my explanation would be like we just prayed and asked the Lord like, okay, this is, this is real messed up. Like this whole situation is so sad and it’s so tragic. But God helped me to believe your promises. That you have a good imperfect plan for us and help me to believe that even when the worst case scenario is happening to my baby, I’m losing a child and help me to still believe that you have a good plan and help me to see that even though I’m walking through this grief and this pain that you’re still like, you’re still moving and working like you haven’t forgotten about me and the Lord. Like he gave us that. , and I. So you’re so right.

Katelyn:                                    00:53:52               Like it being joyful in the midst of mourning and pain. It doesn’t look like skipping down the road, holding hands with evie and you know, acting like life is good again. But it, it does look like being able to look back at James’s life and his story and, and be happy that, that he was here and not just sad all the time. , and the reason I’m happy and thankful that I was chosen to carry him for almost eight months, even though we lost him, is that I know that God is going to use what we walked through and that our pain, you know, is an in vain that there’s, there’s purpose in that. And , I guess in the midst of all the pain, like you don’t see the end result, you don’t see the end of the story that God’s writing. I may never see that until I’m an in eternity, but I trust so deeply that God’s going to use my baby’s life for his glory.

Katelyn:                                    00:54:52               That I can worship him anyway. And to me that’s, that is how we are still joyful. Even, you know, we have pictures from Jj memorial service and there’s pictures of my uncle and I singing a sobbing and crying and worshiping at the same time. And they’re not very flattering pictures, but they, , those pictures are like, I don’t know. That’s, to me what it looks like to be joyful and to be mourning at the same time. Like praising God for our baby’s life. Wishing that he was here, but also having so much, so much faith that God is going to use his life for good and that he’s gonna he’s gonna, transform people’s lives is because our baby existed, but he’s only going to be able to do that. You know, if my, my let him continue to transform our hearts because our baby existed, if that makes sense.

Katelyn:                                    00:55:52               I don’t know if that makes sense, but I think it definitely. Yeah, that’s the best way I can describe it. And, and I don’t want people to think that we have an altogether and they’re like, we can just worship the lord through losing a child. Like I have meltdowns still like probably every other day before we go to bed. Like to the point where Michael’s like we need to go to bed 20 minutes earlier so that you can have your meltdown and we’re not going to bed at 1:00 AM. So it’s not like we have it all together. God, God has been really good to us in the midst of trying to figure out how to worship in the midst of pain and we’re thankful

Ashlee:                                      00:56:29               for that. Yeah, I think that that was a beautiful answer. I love that you said the picture. I’m at James’s memorial that, you know, I captured all of those things in one picture, one moment. And I think often we forget that suffering and hope are suffering. Enjoyed the, those two things don’t have to be mutually exclusive. One doesn’t have to, you know, cancel out the other. Right. Okay, I lied. I have two questions left. , how has james impacted the way you see the world now?

Katelyn:                                    00:57:06               Oh Gosh, I’m all. There’s, so I. okay, I’ll tell you the nber one thing is that, , so Michael and I realized actually this week we realized that, , within our marriage, like, oh, how do I describe this? , so fear our marriage counselor, you’re going to be like, you should maybe maybe just talk to a marriage counselor because I’m just quoting everything she’s told us. She, she explained to us this this week, we had a call with her and she was like, so you fear and anxiety are actually gifts from God, but we distort them in like our hanity. We either give fear and anxiety too much hold on our life and it kind of conses us and controls us. , and we live in fear, , or we push fear Osi, we minimize fear and anxiety either in our own life or the fear and anxiety we see in other people’s lives and we just don’t want to deal with it.

Katelyn:                                    00:58:06               And that’s not healthy. It’s just healthy, you know, like a child is afraid of fire because, you know, that fear protects him or being hurt and that’s good. But in my life, fear and anxiety and he would creep in in my business as an, in my family dynamic and in marriage and in like every part of my life. It’s like fear and anxiety would kind of be crippling to me sometimes. And I realized during James’s journey between Michael and I, , oh, I should probably mention Michael’s the opposite. He’s a minimizer of fear and anxiety. So he sees my fear and he minimizes it. He’s like, Caitlyn, don’t freak out. It’s not a big deal. And that has, it sounds like a little thing, but it has caused so much tension in our marriage the last eight years and especially in business like running a business together and that tension like just has been growing and growing and I realize we feel like we’re in such a healthy place because of James.

Katelyn:                                    00:59:00               Because during that season of being pregnant with James, our fear and anxiety levels were at the same place because it was such a serious thing and it was so heavy on us and it was such this huge burden in our life. And we were on the same page and we felt connected and we felt like a team walking through this journey together. And now that we’re on the side, you know, I can look back to that season. Whereas walking through life carrying James and I realized like every part of my life that used to take the huge part of my mind and produce all this anxiety and worry. I didn’t have time to worry about that. And I was just fine. Like my whole life was consed around this baby. And then the Lord took away all the fear about finances and all the fear about relational city of joy and all the fear about productivity and you know, stupid things like paying a mortgage.

Katelyn:                                    00:59:55               Like I didn’t worry once about those things and I loved that version of myself, especially that version of myself in my marriage. And so it’s like my baby that I don’t have anymore. During the season we had him, he gave my uncle my, a picture of the spouses. We wanted to be forever, not just in the midst of traa and our marriage counselor explained like the people that you were in the midst of your traa are not different people. It’s just people with different set of values in that season like you, you paid attention to certain things in that season with James that were most important and all the crap that you filled your mind and your everyday life with was put to the side. And it’s like James, his life gave you a picture of what life could be like everyday. If you learn to set aside the way that you let fear conse you and your relationship.

Katelyn:                                    01:00:50               So personally, I, I look at the story of James his life and I’m like Michael and I, marriage wise, we see everything differently because of him and that’s such a gift and that’s one way. And then other ways that I see the world differently, , is kinda like what we had talked about beforehand. You know, we had mentioned that like when you are, and I think you even said like maybe Angie mentioned this, it, it might’ve been in her book, I don’t know, but you know, before you live through something like this, you just have these preconceived notions of like what it looks like to make a good decisions and what people should do, what, what people should act like, you know, when they’re, when they’re going through something like this and you just have no idea. Like I have so much more. , empathy for my friends with babies was with special needs even though I’m not living with a baby with special needs.

Katelyn:                                    01:01:49               I thought I was for a season and , and I will always be a mom of a little boy who had down syndrome. And so every time I see a person that had, has down syndrome, I just feel like, you know, this I don’t even know, like a tug on my heart that I never had before because if things had been different, like that would been me. Like I would have had a child that would have those same chromosomal abnormalities and my heart just goes out to them more. I think another that he’s changed the way that I see the world is that, ,

Katelyn:                                    01:02:25               well I guess I just, I’ll never take for granted another healthy pregnancy. , we just recently visited friends at a four day old baby boy and I just held him and I just thought to myself like, this is such a miracle like at and you people say that all the time. Like, oh, like you write on a hallmark card, like such a miracle. But no, really, like when you walked through and seen how many things can go wrong just for one chromosomal abnormality. And you can watch your baby’s body deteriorate week after week. It’s, it’s just amazing. Whenever a baby is born healthy, it’s a complete miracle. And I will never ever take that for granted. And , so yeah, that’s a really long response to that question, but it’s, he has changed the way that I view the world in her marriage, the way I view any person with a disability and like what their parents, you know, the sacrifice that their parents are making an end. The I, you know, that’s different in that I also just view, , I just view life differently in the form of like the medical world, you know, that God allows babies to be healthy all the time and that is something I’ll never take it take for granted. So those are the three ways

Ashlee:                                      01:03:47               I just am. I’m so grateful, you know, because God, God has already used his life in just really beautiful ways in that. Those are three just simple evidences of how his life has impacted yours and lots of other people, you know, in the, in the way that God works in. I, I definitely agree with all of them, but especially your last point, just that, something about that, you know, reality being exposed to how fragile life is, right? Just really is a gift in that you see it for what it is and it’s a gift that we don’t, right. We don’t control. And , it definitely allows us to not take it for granted. Exactly. I, you said that. Okay. My last question is, , if you were to talk to a mom today who has received a similar diagnosis, one that would not end in the way that we would all hope, , with a living healthy baby. What, what encouragement, what words would you say to her?

Katelyn:                                    01:05:16               , well, I think it’s so hard because I really, if I am being honest, I’d want to sit down with her for like three hours and explain a lot of things to her. But, , I guess, you know, my biggest encouragement to her is that she’s going to survive. There were days where I just didn’t feel like I was going to survive and you know, and I would occur. I would encourage you that the Lord will give her what she needs to get through each day. , and I would encourage you to not run from the Lord even though she’s going to be really angry at times and you know, I had days where, , I would start to journal like in a prayer journal that would just stop like mid sentence because I was so mad and so frustrated that this was my story and that God was allowing this to happen to us and , but I didn’t stop there and then keep pushing God away.

Katelyn:                                    01:06:25               I somehow like let the Lord give me grace and give me strength. And that is, that is the only way I survived is allowing the Lord to give me minute. Sometimes it was like day by day. And then as James continue to live, it was like our systems, our by our choosing to keep going and to keep relying on the Lord and, and choosing to believe that like he has a plan like, and he’s going to bring us through this and believing that the Lord loved my baby. I know that the Lord loves James and that he wasn’t an accident. And then this wasn’t just this unfortunate season of my life that it was truly purposeful. Like I think it would be so hard for me if I just went through this season thinking, oh my gosh, let me just get through this season. This is so sad.

Katelyn:                                    01:07:22               Everyone around me is sad. Like this shouldn’t have happened. This is. But if I viewed my life like that, I think that it would have been so hurtful, longterm. But because I viewed this season as, okay, we got pregnant accidentally. The, we weren’t even planning to have another baby when we got pregnant with James like this. This was the Lord’s planning. Obviously every baby is. But the Lord allowed us to get pregnant with this baby. He was not an accident. This was, this was planned. And it’s purposeful and his story is going to change our life. It’s going to change Evy’s life. And I just want to lean in on whatever the Lord has for us. And I guess all that would be my encouragement that, you know, if I had another woman sitting right in there, right in front of me, in my office right now, I would just tell her like, as hard as it is, like just believe the promises that God’s made in his word, that those are completely true and they’re truer even now amidst of tragedy than they, than they were in your normal life. I don’t know if that’s helpful. I hope it’s helpful, but that, that’s what I think.

Ashlee:                                      01:08:27               That’s incredibly helpful. I think that’s incredibly helpful. I’m so grateful that you joined me today and I’m so grateful for James in the way that he has impacted your life and your marriage and the way that you see the world in the way that you trust God and, and the way that we know that his life will impact his sister’s life too, and so many more. But I’m just grateful that you shared with us today and for those listening, I’m grateful for you and I hope that this podcast today blessed you and bless your heart and that through it you find just a tiny bit of hope and joy. And until next time.

PLEASE NOTE
The full transcript is provided by an online app and while I do my best to catch any transcription mistakes it is highly possible that a few may have been missed. If something is not clear please refer back to the audio for reference. 

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