Episode 4 - Grieving a Life-Limiting Diagnosis with Amy Balentine
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Join us for a conversation with Amy Balentine about her story of receiving a life-limiting diagnosis for her son, Simon. Amy shares her journey of walking through Simon's pregnancy and the seven days he lived on earth before going to Heaven. After grieving Simon's death, Amy and her husband also lost three other babies early in pregnancy. Amy discusses with Ashley how this shaped her faith journey and why she has chosen to look for blessings in the middle of her suffering. She encourages grieving moms to lean on Jesus in the darkness of grief. In this episode, we discussed:
Navigating a life-limiting diagnosis in pregnancy
How to handle people who encourage you to "end the suffering"
Choosing life and letting the Lord decide when Simon would pass away
Why it's important to trust God to lead and carry you through this difficult season
The difference between miracles and tragedies
Finding blessings in the midst of suffering
How to surrender control and choose our reactions to unwanted circumstances
Faith statements and how we can teach our heart to feel what our brain knows to be true: "God is good even when my baby dies."
How to handle lonely, dark nights filled with worry when carrying a baby who is expected to pass away
Celebrating your baby's life even when you're sad
Ways to connect with and cherish your baby in your pregnancy
Amy's ministry You Made Me Mom and the importance of hospitality in pregnancy loss support groups
Each episode has a special Hope Guide that you can download by clicking the button below. It is packed with hope-filled resources and extra information from the episode!
Discussion / Application Questions (leave your answers below in the comments!)
In this episode, we discussed the difference between earthly tragedies and Heavenly miracles. When viewing suffering through the lens of eternity, our perspective of our tragic stories can change. In your grief, what blessings have you witnessed in spite of the pain? Are there ways you can change your perspective?
Amy shares the verse 2 Corinthians 12:9 about God's power being made perfect in our weakness. How does this verse resonate with you in letting Christ's power rest on you?
If you are currently pregnant with a baby who has been given a life-limiting diagnosis, what advice in this episode was the most helpful? Write down a few ideas that will help you bond and connect with your baby. (If you have experienced this in the past, write down a few special memories you had with your baby as you reflect on your pregnancy and/or birth of your baby).
Amy mentioned the faith statement: "God is good even when my baby dies." She talks about how it's hard to feel (in your heart) that this is true even though you know it in your mind. Do you struggle with questioning God's goodness? Write a letter to God sharing how you feel, and ask Him to help your "heart catch up to your head" like Amy said.
We talked about the New Heaven and New Earth and Jesus' Second Coming. How does the hope of Heaven impact your grieving? Does the promise of eternity comfort your heart and in what ways?
Amy mentioned that this is likely the hardest road you will ever have to walk through, but you don't have to go through it alone. She said that Jesus will carry you through. How can you surrender your grief to God and allow Him to carry the burden with you?
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CONNECT WITH OUR GUEST
Amy Balentine is the founder of You Made Me Mom, a nonprofit that supports grieving mothers.
Amy is a daughter of the King, wife to Adam, and mother to seven children. Three children are in her care while four reign in Glory.
Connect with Amy:
Facebook /youmadememom
Instagram @youmadememom
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MEET OUR HOST
Ashley Opliger is the Executive Director of Bridget's Cradles, a nonprofit organization based in Wichita, Kansas that donates cradles to over 1,090 hospitals in all 50 states and comforts over 26,000 bereaved families a year.
Ashley is married to Matt and they have three children: Bridget (in Heaven), and two sons. She is a follower of Christ who desires to share the hope of Heaven with families grieving the loss of a baby.
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EPISODE TRANSCRIPT
Episode 4: Grieving a Life-Limiting Diagnosis with Amy Balentine
Ashley Opliger: [00:00:00] You’re listening to the Cradled in Hope Podcast where we believe that the hope of Heaven, through faith in Jesus Christ, has the power to heal our hearts after the loss of a baby. It’s a pain no mother should have to endure, and we want this podcast to be a safe place for your broken heart to land. Here, we are going to trust God’s promise to restore our joy, use our grief for good, and allow us to spend eternity with our babies in Heaven.
I’m your host, Ashley Opliger. I’m a wife, mom, and follower of Christ clinging to the hope of Heaven. My daughter, Bridget, was stillborn at 24 weeks in my first pregnancy in 2014. In her memory, my husband and I started a nonprofit ministry called Bridget’s Cradles, and God has given us purpose in our pain, and we’ve seen beauty come from ashes.
Although we wish you didn’t have a need to be listening to this podcast, we believe God has a reason for you to be here today. We pray this time would be a source of healing for you as we remember that Jesus cradles us in hope while He cradles our babies in Heaven. Though we may grieve, we do not grieve without hope. Welcome to the Cradled in Hope Podcast.
I am so excited to introduce to you today my good friend, Amy Balentine. Amy is the Founder of You Made Me Mom, a non-profit ministry, and I've had the blessing of knowing her since 2015 when both her and I were starting our non-profits right at the beginning, and we've journeyed together through this.
We actually live just three hours away here in Kansas, and she is such a supportive, encouraging friend who values community over competition, and she has such a beautiful testimony to share with you. I'm really looking forward to you getting to know Amy today, so let me share a little bit more about her.
Amy is a daughter of the King, wife to Adam, and mother to seven children. Three children are in her care while four reign in Glory. Amy had two sons die in 2014, Simon, who lived one breathing week, and Thomas, who lived until 13 weeks gestation.
In 2020, Amy experienced two more miscarriages and is now walking through secondary infertility. Since 2015, Amy has been serving in the pregnancy and infant loss community. The Lord gave her a ministry called You Made Me Mom, a support group that serves mothers who have lost babies during pregnancy or infancy through one year of breathing life.
The support group gathers once a month in Amy's home, where she shares the message that God is good even when a baby dies. You Made Me Mom has seven chapter locations, including one in Canada and one online.
Amy is a 2005 graduate of the University of Kansas and currently resides in Kansas City, Missouri. She is a lover of hospitality, fine food, and a well-organized home, which all stem from her 10 years as a wedding and event planner before her calling to work in the home as a mom and a non-profit leader.
You are going to be so blessed by Amy, and I can't wait for you to listen in on this conversation about grieving a life-limiting diagnosis. Let's welcome Amy Balentine.
Welcome, Amy. I am so honored to have you here today. Our listeners probably don't know this, but we have known each other since 2015, when both of our ministries were just starting, and we were getting our 501c3 paperwork back.
And God has been so good to bring you into my life and have you to walk this journey of ministry and motherhood with you. I'm so glad you're here. Would you introduce yourself and tell us a little more about yourself?
Amy Balentine: [00:04:08] Yes. I am so glad to be here. Thank you so much for having me. Let's see, I'm mom to seven, I am married to Adam. To give you an idea of being a mom to seven, it sounds like I've got this very loud house, and I do, but I'm only a mom to three living children, so I've got four babies in Heaven.
I know we'll go into detail about those later, but one lived one week of breathing life, another died around 13- 14 weeks gestation. And then I had two miscarriages last year, right in the middle of the pandemic.
And so, I believe we're walking through secondary infertility right now, but we also have three living kids at home, so we're just so thankful for the lives that we've been given that are in front of us. And I also lead a ministry called You Made Me Mom, and it's a support group for moms who've lost babies during pregnancy or infancy.
Ashley Opliger: [00:05:05] Wow. Amy, I'm so sorry for all of your losses, and going through that in the pandemic is just so, so hard, and I know that's even more isolating walking through that when everything was shut down. I'm sure also your support groups were impacted just like ours were through COVID, and navigating that, just a really difficult year.
So we'll definitely be praying for you going through infertility and grieving your babies. You have such a testimony of walking through grief with such grace and gratitude, walking that dance between grief and joy, and always having a grateful heart, even though you're grieving.
And so if we could go back and talk about Simon first, your precious little boy Simon, who lived for seven days on earth, and you chose life when you knew that he had a life-limiting diagnosis, and you were able to make these memories with him when you weren't expecting to get to spend that time with him after birth. So would you tell me about his life and his diagnosis?
Amy Balentine: [00:06:11] Yeah, I would absolutely love to talk about him. In January of 2014, my husband and I found out that we were carrying a son that was different than our first pregnancy. We went in for an 18-week ultrasound, and we found that his kidneys were enlarged, and so they encouraged us to go to a Level 2 ultrasound.
And I didn't really know what a Level 2 ultrasound was, and I was pretty good about not Googling enlarged kidneys and what a Level 2 ultrasound was. I just decided, “Well, I'll go to a Level 2 scan, and they'll tell me if his kidneys are enlarged or not, and then I'll be on with my day,” and that's not what happened.
We went into the Level 2 ultrasound, it was about an hour and a half, and they said, “We'd like for you to get on the phone with our perinatologist,” who wasn't in the office that day, so it must've been pretty important for them to get him on the phone with me.
And he shared that our son indeed had large kidneys, and they’d really like to take a better look at him, as they thought he had other anomalies: a cleft lip, a cleft palate, and a heart defect.
And so they asked us to come in the next day for another scan. And when we went into the scan and the perinatologist was sitting in the room with us, they looked directly at Simon's brain, and they noticed that his brain hadn't divided into two hemispheres.
And not knowing very much about the development in the womb, I was a wedding planner prior to being a mom, and so I didn't have a lot of experience with development in the womb, and I said, “Well, can it still split?” I didn't know.
And he said, “No. More than likely, your baby has a diagnosis called Trisomy 13,” which is an incompatible-with-life diagnosis. All of these words were very new to me. I had never heard of life being incompatible with life. And so he said, “I'd like to do an amniocentesis if you would allow.” And so we elected to do that, and those findings told us that indeed Simon did have full Trisomy 13.
And my husband and I, and many others in the trisomy world, we call it a life-limiting diagnosis. And he very much was compatible with life. I could feel him moving in my womb, and I knew that there was life inside of me.
So we found out that his brain had not divided into two hemispheres; he had enlarged kidneys, a heart defect, extra fingers and toes, a cleft lip and palate, possibly no eyes, and many other anomalies. And we decided on that day, and prior to even getting the final phone call, that Simon was a boy and that he indeed had Trisomy 13, that we were just going to celebrate this little boy's life.
The Lord so richly blessed us with a time in our pre-marriage class, mine and Adam, my husband's pre-marriage class, there was a question that talked about having children. I had explained to my husband, and he had reflected it back to me as well: No matter what children we have, I don't want to investigate too far in the womb. I want whatever children the Lord will give us.
And I obviously did not have a glass ball, but how precious was the Lord to pave this path? Even before we said, “I do,” to commit these words to one another and to commit to Simon that we were going to let his life and the Lord together live out Simon's life, and we weren't going to make any decisions. I got to be Simon's mom, and I was chosen to be his mom.
Termination was absolutely an option; they offered abortion to us, but we very quickly knew. I mean, from that pre-marriage class, that wasn't even an option for our family because we wanted to see what Simon's life was going to do. And I'm so thankful that we sat back and let the Lord and Simon do the work on his life. So if I could just go ahead and tell you about his birth ...
Ashley Opliger: [00:10:46] Yeah.
Amy Balentine: [00:10:47] So it was at about 36 weeks gestation. It was in May of 2014, I realized I was in labor and my eldest son, I don't think I've mentioned his name yet, his name is Teddy. And Teddy just so happened, just so happened? Right? Nothing is a coincidence. The Lord had perfectly planned this out.
Adam and I were supposed to go on a date that night, and our 18-month, year-old son, Teddy, was spending the night with my in-laws. And I started laboring at about 4:30. And at about 7:00, I acknowledged I was truly in labor. And we called our videographer that we had in place and a photographer that we had in place, both good friends and told them we'd be heading to the hospital at some point that night.
And I showed up at 9:00 PM, and I was carrying a birthday cake literally in my hands, laboring with Simon at the same time, telling them I'm about ready to push. And they got me into triage. They said, “You're a nine, it's time to push.”
And I'm like, “All right, great.” Two pushes later, Simon was born. He was born with his eyes open. He indeed had eyeballs. We didn't know if he would be born breathing. We were told he could die in utero, that a third of the babies die in utero, a third die during labor because it's just so hard on their fragile bodies, and a third die minutes or hours after birth.
So for him to be born, I wasn't hooked up to fetal heart monitoring, so I had no idea if his heart had stopped beating. I just thought if I had been hooked up to fetal heart monitoring, it'd be hard to labor through. And I know the experience with Bridget, you know what it's like.
And I went on to labor with another baby who had died, and I was thankful to just be surprised. And we were doing the same thing regardless. If Simon was alive or Simon had died, we were going to celebrate his life with that cake that I had brought in, with family meeting him, so it didn't matter during labor if he was alive or not.
So when he came out with his eyes open, staring at Adam and me, we were so thankful, so many prayers had been answered in that moment. And we prayed, we dedicated him to the Lord that night and prayed that he'd be alive in the morning when his big brother Teddy came to visit him.
And he indeed was. And 15 hours after birth, we took him home and he lived out the next seven days and 22 glorious minutes in our home, and it was the biggest unexpected blessing. My aloud prayer, the one that we shared on our blog and publicly, was that Simon breathe.
And indeed, that was a lofty prayer, like a given that your baby would breathe, but that was our prayer, given Simon's diagnosis. And when he breathed, I was so thankful. But my private prayer, the one that I barely shared with anybody, definitely my husband, I think was about the only person that I shared with him; I wanted him to dwell in our home so badly.
And when I was rolled out with him in my arms in that wheelchair to our car, it was such a blessing. So we were so thankful to bring him home for those seven [days] and 22 minutes. And it was hard to live on hospice with a baby at home with a feeding tube and oxygen.
I had had no experience prior to that time, certainly never experienced palliative care, certainly not with an infant. But I learned that Simon was just an infant. He just needed our love and sometimes a little extra oxygen. And we just let his body do what it wanted to do.
Five different times during that week, we thought Simon was going to be with the Lord, and we surrendered him time and time again. And he would go like a dusky blue and then he’d pink back up and we'd get another day with him.
I know that this is a very typical thing with apnea and with parents that walk trisomy and other similar diagnoses. You think it's the end and they kind of bounce back, for lack of better words.
We're so thankful for that time, but it was excruciating. I won't pretend that it wasn't, but it was beyond a gift. And I can't believe that I was chosen to experience such a rich blessing of Simon’s life and to see the Lord work through my family and through Simon’s life.