I recently watched sweet friends of ours walk through a sadly similar story. They lost a baby at 36 weeks and it was a complete shock. We lost a baby at 31 weeks and we knew we were going to lose him for 3 months. It’s hard to tell which story is more heartbreaking but what I’ve learned throughout this season of life is that valleys are valleys. You can’t really compare. Loss is different for everyone but the pain is still heavy and the heartache dwells deep within. As horrible as it is to feel like an “expert” at living through a stillbirth, there was something redemptive about being able to help our friends walk through the darkest days of their life. I have realized that because of my experience and my story, I have a voice and an opportunity to help those living through the pain of losing a baby. I can also help those who are watching a friend or family member lose a child and don’t know what to do.
I get it. It’s so hard to know what to say. What do you do when someone you love has just found out that their baby isn’t going to survive or has passed away? What is too much? What is hurtful? What will actually help them?
I can’t speak for every grieving parent. I know that every story and every mother is different. However, my hope is that this blog post will be a resource for friends and family members of someone who is losing a baby. I want to be able to share my experience and what I really appreciated and what was really hard for me so that I can save others from the unknowns of not knowing what to do.
My hope is that this simple blog post will be shared with grieving moms who have similar stories to ours. Maybe just hearing thoughts and memories and realizations from a momma who has been in their shoes will be a gift to them and will help them put words and feelings to the chaos going on in their heart. Everything I say won’t resonate with every parent who is walking through a similar story to ours…. but maybe some things will stand out and they’ll be able to say “You know, I agree with that and I actually need that right now.”
I remember being in the trenches of a fatal diagnosis, living day-to-day just waiting to lose him and then being in shock and exhausted after giving birth to Baby James. (If you don’t know Baby James’ full story, you can read more HERE & HERE). It was nearly impossible for me to express or comprehend what I needed during that season. I was honestly just trying to survive…. and in the midst of just trying to survive, everyone wanted to know what I needed and I didn’t have a clue. As I think back on my story and the continuing grief that I feel today, 10 months later, I think there are several categories of things that I needed.
I needed different things spiritually, emotionally and physically.
Not only did I need different things in these different categories, but I needed different things in these different categories during EACH PHASE of my journey with James. When we found out, when we were just waiting, when I was in labor, leaving the hospital and coming home without a baby, starting to figure out life without the baby that I lost…. in every season, I required different things. I know, it sounds so high-maintenance… but when you go through something this traumatic, that’s exactly what it is. It’s complex, it’s hard to understand and it is high-maintenance. This is what has led me to the OVERARCHING thing that I needed in this season…. and that’s GRACE.
I’m going to share what I needed physically, emotionally and spiritually…. but I can’t get into the details of all of that without sharing the absolute need of GRACE.
First, I needed GRACE with myself. Another mom who lost a child told me that I needed to remove the word “SHOULD” from my vocabulary during this season of life. She couldn’t have been more right. It’s easy to start wrestling with an internal voice that says…
“You should be journaling more while he’s still alive…. you should be more upset today, think about what’s happening to you… you should be talking to Evy more about James while you’re still pregnant… you should cherish being pregnant and the fact that he’s still alive instead of just wanting this to all be over… you should be getting more done… you shouldn’t be getting so much done, you’re losing your baby….”
Shoulds, shoulds and more shoulds. The truth is, you can’t “Should” yourself when you’re in the midst of a crisis like this. No one can tell you what’s normal… what you should feel… what you should be doing. It’s all an unpredictable roller coaster and it’s so freeing to let go of the “shoulds” and to rid yourself of expectations.
Secondly, no one else should be “Shoulding” you!!! This is hard because those that love you and are watching you grieve and suffer, they only want to help you! Sometimes help can come in the form of “you should try this…. or you shouldn’t dwell on that… or you should consider this”. I am thankful that I didn’t experience much of this at all but I have heard horror stories of women whose friends and family…. who have never lived through losing a child or anything close to their story… were telling them what they SHOULD be doing and honestly, they have no right to. Unless they have walked through this kind of pain, they can’t “should” you in any way… even when their intentions are that they are trying to HELP you. You have enough going on… you don’t need outside voices telling you what to do and how you should be handling this.
GRACE is a beautiful thing and not only did I need it from myself, I needed it from other people too. If you’re walking through the unimaginable, you may do and say and feel some things that are hurtful to others. You may have meltdowns and yell things you never meant to yell. You may be insensitive and harsh and you didn’t even realize it. It’s important for your friends and family members to have GRACE with you and realize that you’re living through one of the worst things any woman (and family) can experience and you’re far from being your normal self…. and that’s ok. I’m so thankful for my family and the grace they showed me during this entire season. It’s hard on everyone… but it’s especially hard on the mom who is carrying the child who isn’t expected to survive. There are emotional battles, mental battles, and physical battles to deal with and it’s incredibly difficult. My hope is that this post will shed some light on what life looked like for me during our season of struggle and loss. If I had read something like this in the midst of our journey, I think it would have helped me feel more normal, encouraged and understood.
What did I need PHYSICALLY?
I needed help wasting time and getting through each day. I really needed this while I was carrying James after his diagnosis. But I only wanted to do this with people I felt comfortable around. It’s hard to explain but I’ll expand on this later. I needed to get out of the house somedays in order to not go crazy. However, it needed to be on my terms. I appreciated people asking me to do things but I also appreciated them saying “Lets do lunch… but no worries if this isn’t what you need right now”. That gave me an out if I didn’t want to and I just needed to be at home and alone…. which leads me to my next “need”.
I needed it to be ok for me to just disappear by myself. Sometimes I would be working in my office or around the house and I just all of sudden needed to get away and go cry in our bedroom. I could feel that wave coming… my nose and eyes would burn… I would feel irritable… I just needed to go sob by myself…. and my family let me do that. They didn’t come running after me or try to “help” me… they just let me be alone and somedays I needed that space. I know, if you’re a family member, you’re probably thinking “Well how do I know if I should go be with my hurting daughter, sister, wife, friend etc. and how do I know when they just need to be alone”. I know it’s different for everyone, but I would give them space first…. and then text them. Texts are great. It shows you noticed that they are upset and you’re ready to be there for them if they want you… but you’re not in their space and you’re respecting the fact that they may just need to be alone.
I needed something to look forward to….. for me, this was our double-date with Joe and Emy. My sister and brother-in-law moved into our basement apartment just 5ish weeks before we found out about James’ diagnosis. Talk about God’s perfect timing. Every Tuesday night, my mom and dad would watch the babies and we would do a double date with Joe and Em. I seriously felt like I was living for these date nights some weeks. They knew everything about our situation… there wasn’t any weirdness or awkwardness about what not to say around me…. if I wanted to talk about James, I could. If we just wanted to be on a double date and act like nothing bad was happening, we could do that too. We went to all kinds of local restaurants and made it a point to try somewhere new and fun each week! This was great because there isn’t ONE spot that we went over and over again during that time frame that could remind me of my season of being pregnant with James.
I really appreciated gifts that were fun… We received the sweetest gifts and we are SO very thankful for all of them. People were so incredibly kind and thoughtful during our season of losing James. However, some of the BEST gifts that I appreciated the most during this season are far from what you would expect. When I came home from the hospital after losing James, my best friend Jill had left me a whole bag full of sample cosmetics, face masks, and fun new earrings on my dresser in my bedroom. You would NEVER have guessed that I would have loved this so much… but I did. Why? Because after you give birth, you just feel frumpy and gross and far from put-together. The bathroom represents not-fun-stuff. However, this gift was a perfect pick-me-up because it was fun for me to try new mascara and blush and lipgloss once I finally showered and got “ready” for the first time. It was just a practical gift that was FUN for me in a season where nothing seemed fun. Michael and I loved gift cards to fun dinner places during the season of carrying James because we didn’t like cooking at home and again, I needed to get out of the house some. We received a massive family sized blanket that we used during movie and netflix marathons. We also LOVED getting gifts for EVY during this time because it brought us so much joy to see her light up over something new!!
I needed something to carry out of the hospital….This is going to sound so sad… and it is… but it was such a gift to me. My sweet friend Annamarie sent me beautiful tulips and chocolate chip cookies to the hospital after I had James. I loved them… but it still makes me cry when I think about how special these flowers were to me on the day I was discharged. I was wheeled out of the hospital in a wheelchair just like most new moms… but instead of holding my newborn in a carseat, I was holding beautiful tulips. I didn’t have that sinking feeling of empty arms as I left the hospital because of my flowers from her.
I needed to read this book….. https://www.amazon.com/Will-Carry-You-Sacred-Dance/dp/080546428X
This book was incredible for me because I read it while I was still carrying James. I loved it so much that I cried when it as over. I also loved that Angie, the Author, included a chapter written by her husband for other husbands who were walking through this awful reality with their wives. Michael needed to hear from another dad that it was ok to not be grieving like his wife. It’s so different for dads and it’s ok that they don’t experience the same thing as the mom during a loss like this.
I needed some type of plan….
No one tells you how to do this. You can’t really google “How do I survive a stillbirth?” and get good answers. A mutual friend of some friends in college contacted me while I was pregnant with James. She is a NICU nurse and has sadly seen so many parents walk through our story. She sent me a sample birth plan for a situation like ours and as hard as it was to write ours out, it was one of the best things we did. Michael and I wrote out what we wanted to happen as soon as James was born. We wrote what we wanted to be able to do… I wanted to put an outfit on him… Michael gave him a little bath and cut the cord… we wanted a cuddle cot to keep him cool so that we had more time with him…we wanted molds of his feet and hands… etc. We wrote it all down so that there was no chance of regretting that we didn’t think of something. I know that the idea of this seems unnecessary when your baby isn’t going to live… but it’s SO wonderful to have and gave us AND our nurses so much peace on James’ birthday. Our birth plan for James can be downloaded HERE.
I needed to be allowed to do what seemed unthinkable…. I hosted a baby shower in our home for a dear friend in the midst of carrying our sweet James and knowing he wasn’t going to survive. This friend pretty much begged me to let her do it elsewhere but I really, truly wanted to have it at our house. No one understood this. I’m pretty sure some people thought I was crazy for putting myself in this incredibly hard situation of celebrating someone’s baby boy while everyone in the room knew that I was losing my own. However, think about what the other options were…. we could have cancelled hosting the shower and they could have held it somewhere else… and I still would have had to decide if I was going or not. If I went, I would sit through a shower knowing that it was supposed to be at my house but it wasn’t because my reality was just too sad for that. The other option was that we could have changed the location and I just wouldn’t have gone…. but I would have known that all of my friends were together and I would once again be stuck at home, trying to survive another day of the hardest season of my life. To me, it was better to be busy and host the shower and love my friend (who had attended my shower for Evy after having her first miscarriage) than to cancel because my story was so incredibly sad. Was it hard? Sure. Am I still kinda shocked that I chose to do that? Yes….. but in the midst of it, it was what I needed…. and I’m thankful that my friends and family just trusted that I knew what I wanted to do and didn’t MAKE me cancel it when I truly didn’t want to. We took a picture at this shower of me with some friends and their baby bumps. In some ways, it’s so sad to look at…. but in other ways, I’m overcome with thankfulness that while James was alive, I truly celebrated him. I took that bump picture with friends because on that day, I had my baby boy still here with me and he was alive…. and he was a part of our life… it didn’t matter that he wasn’t always going to be here with us on earth like all of the other babies in that picture… it just mattered that, in that moment, I treated him the same as I would treat any other baby I’m blessed enough to carry. I look back at that picture and I’m so proud of myself… I’m so proud of the strength I had that was obviously coming from the Lord.
What did I need EMOTIONALLY?
I needed to talk to other women who had survived this….
but again, on my terms. I received so many emails from moms who have walked through a similar story and I appreciated every. single. one. of the them. However, I truly believe that God gave me very specific people to connect to on a deeper level. I didn’t need to talk to 15 moms about their experiences, I just talked to a few. I didn’t like feeling like someone felt that I NEEDED to talk to them in order to get through this in a healthy way. I appreciated encouragement, advice and support with an invitation to talk further if I desired that…. but no pressure. God gave me what I needed in this area and I’m so thankful for that. Someone in my circle of friends knows Angie Smith
. I have no idea who. But someone contacted her and she contacted me and we had two long phone conversations that I will cherish forever. I cannot explain how healing and wonderful it felt to talk to a woman who knew my pain but also has been on the other side of it for ten years. What I specifically loved about our conversations was the honesty. I thought it was awful to be fearful of seeing my baby’s face because of all of his complications… but she assured me that that was ok and it was normal. I thought it was awful to be worrying about if James survived with severe, life-altering complications, what would that mean for our life and Evy’s life? But she had had the same fears about he daughter Aubrey. I just about drove myself insane worrying about how James’ life would end if I had to make a decision to be induced and she reminded me that I’m not capable of changing God’s story for my life. She has teenage daughters and a busy life and she sat on her front porch and laughed and cried with me and I’ll never be able to thank her enough for that. She was who I needed… I didn’t need 15 lunch dates or a ton of other phone calls . God drew me to who and what I needed in this area of the journey.
I needed hope that my life wasn’t over… I remember Angie saying to me “Katelyn, you WILL smile again, I promise you will.” and she was right. But in the midst of the hell of carrying a dying baby, I really couldn’t imagine ever being happy again. I had another mom tell me that even though I couldn’t imagine it now, I would one day… down the road… look back on this season with fond memories of my baby. She was right. I have horribly sad memories but I also have sweet memories of the day we met our little boy.
I needed to be around people who didn’t walk on eggshells….. This is hard to explain…. but some people can be so devastated for you that they actually need YOU to comfort THEM. I know that sounds crazy… but I’m an extrovert and a people-pleaser… so when I can tell that someone is extremely nervous or upset about my reality, I over compensate and try to make THEM feel better and more at ease!!! And I’m the momma losing a baby! I understand the nervousness and the fear of saying something that will upset me. That’s a legitimate fear… so here’s my attempt at trying to help this issue. Every grieving mom is different and has a different personality and will need different things. However, I think any grieving mom would appreciate hearing “I don’t know what you need right now… but I want you to know that I love you… and I love your precious baby…my heart is breaking for you and I am here for you whenever you know how I can help”. That says so much. What happens when people walk on eggshells is that it feels like no one understands just how much you’re hurting…. and the fear of saying the “wrong” thing takes priority over acknowledging my pain. I ALWAYS appreciated someone grabbing my hand and looking me in the eye and saying “I’m praying for you” or “Not a day goes by that I don’t think of you”…. and then I say “Thank you” and that’s it. No tears, no long conversation, no comments that are hurtful, no questions that are too much… it’s just a genuine way to engage with a momma who is losing a baby and let her know that she’s loved. Those type of conversations also open the door for MORE of a conversation if I felt up for it. Also… if someone said that to me and I cried… THAT’S OK! Actually, it’s really nice. So often people think tears are a sign of saying something offensive or hurtful but what if something else could be true…. what if tears were a sign of relief? I remember crying with a friend at lunch and feeling like such a weight had been lifted as I drove home from our time together. Please don’t refrain from loving a hurting friend because your fear of saying the wrong thing takes priority over showing them that you care.
I needed to talk about him…. This may not be every mom’s experience. However, I realized in the midst of my journey with James, I really loved it when my friends would ask me about him. I remember sitting at CAVA for lunch with my college roommates and talking about him for over an hour. What his complications were…. what our appointments were like…. what was unique about him… what the doctors are expecting to happen… how I felt… what I was hoping for in terms of delivery….etc. I REALLY appreciated my friends asking me about my baby even though his story was sad. It made it seem like he was real to others and not just me. It gave me a chance to talk about him while I still had him. What some people didn’t realize was that all of his complications and our experience in ultrasound rooms were ALL that we had of him. Think about how much you love to talk about your children if you have them…. I could talk about Evy all day long… but I only had a small window of time where James was alive and it was actually a joy to be with friends and have them ask me questions about him. Again, not every mom is going to want to do this… but for me, it was something that I loved and appreciated. If you have a friend living through this reality, just ask her if she enjoys talking about her baby or if it’s too hard right now…. and she’ll tell you!
I needed to see other people’s tears for my reality…This sounds so needy and kind of manipulative but it wasn’t that way at all. I realized during my journey with James that I really cherished the moments when friends weeped with me. One example… my best friend and I were supposed to have a double shower for our second babies since we were both having the opposite sex of our first. Well, that day came and James was in heaven already so I transitioned to helping other friends throw the shower for Jill. I really felt ok about helping with the shower. I didn’t feel weepy or sad. I had Evy with me and that helped keep my mind off of things….but before everyone showed up for the shower, Jill and I were in her office by ourselves and Jill just looked at me and said through tears “I want you to know that this isn’t how it should be. This should be your shower too and it’s not ok.”. We cried together and I can’t tell you how much that meant to me. It was a 30 second conversation that made me feel so loved and made me feel like James wasn’t forgotten.
I needed doctors and nurses who respected our decision to keep carrying James and who valued his life… I have no idea what my doctors believe spiritually. However, what I do know is this…. Dr. C and Dr. Troyer loved our baby and loved us enough to NEVER make us feel bad for wanting to continue a pregnancy that wouldn’t end with a living baby. In fact, not only did they not make us feel bad for carrying James as long as I possibly could, they encouraged us. Dr. Troyer offered to do ultrasounds weekly just to let us see him alive on the TV screen one more time. There wasn’t any point in doing more ultrasounds except that as his parents, we found joy and comfort in “checking” on him each week. Of course we were looking at fluid levels and seeing if his condition has worsened, but we knew that deep down, these appointments were for us and our emotional well-being. Dr. C graciously answered so many questions and eased our nerves about the process of a stillbirth. She never made us feel like “OK guys, we just need to get this over with….we know the outcome.” Both doctors called James by his name and still do. Both doctors told us that our love for our baby was admirable and that it was an honor to walk through this journey with us. Lastly, we have the most precious audio from the moment James was born…. and where you would normally hear a baby’s first cry, you hear Dr. C say “Welcome baby” in a sweet voice. I’m crying just thinking about how much of a gift that was to us….. to not have the dead silence that people warn you about when you deliver a baby who isn’t breathing. Having a team of doctors that loved us throughout this incredibly hard process and honored our view on life and what we knew we wanted changed everything. If you’re in a situation where you are facing a fatal fetal diagnosis for your baby and your doctors appointments are filled with pressure to do what you know you don’t want to do in regards to continuing your pregnancy, you need and deserve a different doctor. Our doctors looked out for any signs of harm or complication for me but they never pushed us to terminate or induce earlier than we wanted and we were so thankful for that.
What did I need Spiritually?
I think it’s important to share that what I needed spiritually wasn’t something that I needed from other people. If you know someone walking through a similar story to ours and you want to encourage them, maybe sending them the playlist at the bottom of this post would be a good way to do that! It’s subtle way to remind them of God’s faithfulness but not speak into their life in a way that could be hard for them to hear.
Worship music playing in our house: Michael is great about this in our house… he always has music playing. However, in this season of life, I think he knew that worship music was peaceful and it was something that helped me get through the day. It was especially wonderful to have playing in the morning. Mornings were so hard. This is going to sound so sad…. but every morning that I got out of bed was another day of struggling through carrying a baby that wasn’t going to survive. The mornings represented at least 12 hours of survival that were laying ahead of me…. so starting the day with worship music helped remind me that I could do one more day.
I needed to journal: I have journaled for years…. but in this season, I found myself not only journaling in my actual journal that I keep beside my bed, but also writing long documents in Evernote about what life felt like. I know this isn’t what everyone needs while carrying a baby with a fatal diagnosis…. but it was good for me. It helped me realize how I was actually feeling and what I needed from God. Sometimes there are too many emotions to be able to clearly see what I needed. Some days just felt like a blur…. and so I wrote about them. I journaled about our journey… so we wouldn’t forget what happened appointment to appointment… I wrote about the struggles and the fears and the uncertainties. Looking back now, I’m so thankful that I have proof and reminders of God’s faithfulness. I would NEVER remember exactly how painful certain parts of this season were if I hadn’t written so much about them.
I needed to be reminded that God is still good: It’s easy to think that we have been forgotten when all hell breaks loose in our life. If God is so good, why would He allow something so awful to happen to someone who loves Him? Why would he allow our baby to die and for us to suffer through something so awful? I thought about this so much during our three months of anticipating James’ death. I kept coming back to this thought….either God has ALWAYS been good or He was NEVER good. When we walked into our 20 week ultrasound, we loved the Lord and we knew He was good and that we could trust Him…. that fact didn’t change minutes later because we got news that we didn’t want to hear. His goodness didn’t change because our situation did. If that was how finicky our God was, he wouldn’t be God. Either God was truly good and I could trust that despite my pain, He was in control or I needed to just give up on the faith that I have known to be true my whole life. Deep down, I knew what truth was. I knew that God hadn’t forgotten me and that this season of my life wasn’t a mistake… but in fact, it was just the opposite…. it was purposeful. This was the baby that surprised us. We weren’t planning on having a baby 15 months after having Evy…. but God knew that James would exist. He knew all of the problems that he would have and he knew of all of the people would be impacted by his story and his short life. I was reminded of this truth over and over again during my months of carrying James and the months that followed his birthday.
I needed to remember that because of the Gospel, I had hope: There is a song that we played throughout the house during our three months of waiting and that we also sang at James’ memorial service. This song has a line that says “Waiting for change to come, knowing the battles’ won, for you have never failed me yet. Your promise still stands…. great is your faithfulness, your faithfulness… I’m still in your hands… this is my confidence, you’ve never failed me yet”. Every time I heard that song, I was reminded that my baby was going to a place that we all long to be eventually. He would be healed and whole and his problems would be gone. I was reminded that because of Jesus and the cross, our sweet boy had the hope of heaven. It’s life-situations like ours that really make you consider…. “Do I just say that I believe this or do I really, truly KNOW that what I believe is the truth”? That’s the most powerful part of our story. We experienced God’s love and His grace in the most real and tangible way as we walked through this season. I have never felt closer to the Lord than the day we met and said goodbye to our baby. If God wasn’t good and He wasn’t faithful, I don’t think that would have been our reality. I feel like we would still feel extremely lost, confused, hurt, bitter and resentful. Sure, there are moments when those feelings creep in, but we don’t live in them day in and day out. We have a deeply rooted hope because of the Gospel and God reminded me of that constantly, in so many ways, during my three months carrying James after his diagnosis and the months after losing him.
I needed people praying for us: For some, staying quiet is what is best for them. Some people living through a situation like ours need to be reserved and they don’t have any desire to share their pain or their story and that’s ok. I will say, from personal experience, there is so much relief that came from letting the world know that we needed prayer and that life was extremely hard. I know God used our Instagram posts and blog posts to change lives and also to bring peace to our time of turmoil. There were literally thousands of people praying for our sweet baby and for us. We felt those prayers and we were so thankful for everyone that continually lifted us up.
There are probably many other things that I could share, but I’m going to leave it at this for now. I know this was one of my longest blog posts to date. It’s long and intense and heavy to read…. but it’s an outpouring of my heart and my desire to help others know how to love their friends through a story similar to ours. I hope that this blog post will be shared with moms who received devastating news like ours and that they will find encouragement and clarity and hope from my experience. I hope that friends and family members of those carrying babies with a fatal diagnosis will have a clearer understanding of how to love and serve them during the hardest season of their life. I know that every woman is different…every story is different… and every family will desire different things when faced with an unimaginable reality… but my hope is that this post will start discussions about what is wanted and needed.
I think the most appropriate way to end this post is to thank all of our sweet friends and family members for loving us and caring for us in the midst of this incredibly hard year of our life. We didn’t walk through any of this alone and I’m so thankful and grateful for the community that surrounded us through it all.
James’ Stillbirth Birthplan
Our “James” Playlist on Spotify
Our letter to James after his diagnosis
Baby James’ Birth Story