Jubilee Nileen Fry was born at 25 weeks, 6 days gestation, weighing in at just 18 ounces, and was not expected to live through her first night. However, she repeatedly astounded her medical team with her tenacity and fighting spirit. Her testimony throughout her 393 days in the NICU was “Watch What God Will Do”, and her earthly life, though short by some standards, continues to have a profound impact on those around her.
Jubilee's mom and dad, Cameron and Lyssah, join me on the podcast today to share her story. We also discuss the emotional toll of pregnancy after loss (you’ll even hear baby Aili in the background as we chat), and the Frys will share a little bit about their experience at a While We’re Waiting Weekend this past summer. Lean in and be encouraged today!
Connect with Cameron and Lyssah:
Website: https://hisgirlfryday.com/
Instagram: https://www.instagram.com/hisgirlfryday/
Twitter: https://twitter.com/HisGirlFryday
Facebook: https://www.facebook.com/hisgirlfryday/
I would love to hear your thoughts on the show. Click here to send me a message!
** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry.
We'd love for you to connect with us here at While We're Waiting!
Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parents
Click HERE to learn more about our network of While We're Waiting support groups all across the country.
Click HERE to subscribe to our YouTube channel
Click HERE to follow our public Facebook page
Click HERE to follow us on Instagram
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Click HERE to make a tax-deductible donation to the While We're Waiting ministry
Contact Jill by email at: jill@whilewerewaiting.org
Jubilee Nileen Fry was born at 25 weeks, 6 days gestation, weighing in at just 18 ounces, and was not expected to live through her first night. However, she repeatedly astounded her medical team with her tenacity and fighting spirit. Her testimony throughout her 393 days in the NICU was “Watch What God Will Do”, and her earthly life, though short by some standards, continues to have a profound impact on those around her.
Jubilee's mom and dad, Cameron and Lyssah, join me on the podcast today to share her story. We also discuss the emotional toll of pregnancy after loss (you’ll even hear baby Aili in the background as we chat), and the Frys will share a little bit about their experience at a While We’re Waiting Weekend this past summer. Lean in and be encouraged today!
Connect with Cameron and Lyssah:
Website: https://hisgirlfryday.com/
Instagram: https://www.instagram.com/hisgirlfryday/
Twitter: https://twitter.com/HisGirlFryday
Facebook: https://www.facebook.com/hisgirlfryday/
I would love to hear your thoughts on the show. Click here to send me a message!
** IMPORTANT** - All views expressed by guests on this podcast are theirs alone, and may not represent the Statement of Faith and Statement of Beliefs of the While We're Waiting ministry.
We'd love for you to connect with us here at While We're Waiting!
Click HERE to visit our website and learn about our free While We're Waiting Weekends for bereaved parents
Click HERE to learn more about our network of While We're Waiting support groups all across the country.
Click HERE to subscribe to our YouTube channel
Click HERE to follow our public Facebook page
Click HERE to follow us on Instagram
Click HERE to follow us on Twitter
Click HERE to make a tax-deductible donation to the While We're Waiting ministry
Contact Jill by email at: jill@whilewerewaiting.org
00:00:00 - Jill
Hi, Cameron and Lyssah ... Thank you so much for joining me on the podcast today.
00:00:04 - Cameron
Thanks so much. We're excited to be here.
00:00:07 - Jill
Yeah, well, I have been looking forward to having you. You guys attended a retreat where I was not present, so I didn't have the opportunity to meet you in person. So I have really been looking forward to having this conversation, and I'd like to start out by just letting you introduce yourselves, tell us where you're from and what life is like for you there.
00:00:45 - Cameron
So we're currently residents of White Bluff, Tennessee, about 35, 40 minutes miles west of Nashville, and we've been there for about six years and really enjoy the western side. We often joke with family, west side is the best side as far as the big picture. We're both from California, so our roots go back to West Coast. But for me, I've spent most of my life in Tennessee, so I tell people what you see is Tennessee, but I know where my roots come from. I'll let Lyssah explain her story here because she hasn't been in Tennessee quite that long.
00:01:03 - Lyssah
I've been out here, though, since 2010, so if anyone's listening from Tennessee in Nashville area, I did not come when everyone came during COVID … I've been here much longer, so don't be offended. But yeah, we live in White Bluff. We've lived around the Nashville area, middle Tennessee, since we got married ten years ago. We have five children, four with us, and it's crazy. Our kids, our oldest is seven, so we've got a seven year old, a five year old, a three year old, a would be just turned two year old, and then our six week old. So we got a full house and homeschooling and Cameron works remotely for a company that works with nonprofits and taxes and fun stuff like that.
00:01:52 - Cameron
We're a nonprofit accounting firm. Yeah.
00:01:54 - Lyssah
Got our hands full with all those littles.
00:01:57 - Jill
Wow. Your house has got to be a fun and exciting place to be with all of those kids around.
00:02:04 - Lyssah
It is definitely an adventure and loud.
00:02:09 - Cameron
I'll put it this way, there was a zoo outing that our work did back in June, and we had prior commitments, but I'm like, I'm at the zoo all the time.
00:02:18 - Lyssah
That's right.
00:02:19 - Jill
You live in the zoo. Yeah. What a sweet season of life that is. I know when you're in it, it seems like it's going to last forever and all the craziness, but it goes by quickly.
00:02:31 - Cameron
They shoot up like weeds and they keep you humble along the way. So we do the traditional thing with parents where we mark the heights and it kind of displays the passage of time. It's surreal. You try to live life in slow motion. I know that's uncomfortable for a lot of people, but every day is a gift, and as we'll talk about in this podcast, Jubilee helped cement that into our well being.
00:02:56 - Jill
Yes, absolutely. So tell us about Jubilee. I would love to hear her story.
00:03:05 - Lyssah
So Jubilee is our fourth child. She was our second surprise baby because we planned to be done after number three. And then, lo and behold, that was not the case. And we went into our pregnancy assuming it was just like any other pregnancy. I'd always had kind of rough pregnancies, but like, healthy, healthy babies, you know what I mean? Uncomplicated by those kind of standards. And so we went into our anatomy ultrasound, thinking that this is just going to be like it had always been. And we went in and found that she was severely IUGR, which meant that she had inner uterine growth restriction. At 23 weeks, she was barely measuring 12oz. Normally, she would have been measuring at least a pound or a pound .2 or so. We found out that I had hardly any amniotic fluid. What should have been at least a ten ended up actually only being a five or a six. And so pretty much right there, my doctor was giving me steroid shots, which I didn't know at the time that meant they figured she'd be coming in about 48 hours. Oh, wow. We left and kind of had this moment of, okay, what are we going to do? We don't know. Just going to have to walk this by faith. The next week, I went and saw the maternal fetal specialist. Cameron and I did, and our goal was, let's try and make it 32 weeks. We can do this. And of course, I'm like a challenge. Accepted. Let's do it. I was drinking for my amniotic fluid. They said that was the only thing I could do to help. The amniotic fluid was just to keep drinking water, like, up my water intake. So I was drinking over 200 oz a day. Wow. And that was keeping the level steady, so I wasn't losing anymore. Tuesday of my 24th week, we saw the maternal fetal specialist, who were going to be being monitored weekly. And then Friday, I woke up with a horrendous headache, checked my blood pressure. It was extremely, extremely high, and called my doctor. They said, okay, rest for an hour, take it again. I rested for an hour, took it again. It had gone up even higher. And they sent me triage, got in, found out I had protein in my urine, so preeclampsia rearing its ugly head, and they checked me in, and I was hoping it would be like, okay, I'm checked in maybe for the weekend for observation, and they'll give me medicine and send me home. And I remember I had a nurse that night look at me and go, oh, honey, you're here till baby comes. And so that started the whole, okay, well, we're trying to make it to 32 weeks. And at this point, I was 24 and six, and the doctor was like, let's just try and make it to 26 weeks, and then we'll go from there. And I made it to 25 and six and ended up they were doing the normal monitoring, checking baby's heart rate, all that kind of stuff. And she was having some major desats. And so they looked at me. This was like the first morning that Cameron didn't come in to visit me because he had a men's breakfast at church. And they're like, Call your husband. He's got an hour to get here, just as long as it takes for us to run a mag drip. We're taking was just the it was the craziest, most whirlwind kind of season of our life, because it literally went from you go in thinking everything's okay, to every time something changed, it was like, oh, no, you think it's okay? And then it's like, no, really not okay. And we joke because the Lord had put the name Jubilee on our hearts before we even knew it was a girl. Someone busted out the old school song, Did You Feel the Mountains tremble? Is that the one where basically it talks about, open up the doors, let the music play, let the streets resound and singing? There's a point that says it talks about Jubilee in that just one random offshoot. And there was something when we heard that song that just resonated, and we knew it was going to be her name, but then we also heard the word surrender, so we ended up naming her before we knew anything was wrong. Jubilee Nileen, which means celebration of surrender. And we had to laugh, though, because we had done a lot of study in the weeks leading up to when all this started happening about the year of Jubilee and how it was a year of forced rest. It was a year of having to fully trust and rely on God. It was a year where captives were set free and deaths were forgiven and everything was kind of brought back to this place of equilibrium and where it needed to be, if that makes sense.
00:07:58 - Jill
Yeah.
00:07:59 - Lyssah
And we had no idea from literally randomly having to go impatient, that we were starting our year of Jubilee. And that was a year of forced rest and a year of slowing down and a year of depending on God for everything. We went in for the C section. It was considered emergent, not an emergency, obviously, because I was awake for it. And she came out I think her scores were like one or something at three minutes, and then at like five they were up to like one, two and four or something like that. So we got to see her very briefly. They held up a blanket right by my face and said, Here she is. Okay, bye. Get a picture. And we got a picture. And we had no idea how small she was or what everything meant. When we got up to see her for the first time that evening, it was probably like, around 10:00 pm or something. She was under the bilirubin lights. She was in a little isolette, and we found out that she was one pound, 2 oz or 515 grams and ten inches long. And we always will tell people to put in perspective. If you picture an Elf on the Shelf that is smaller than an Elf on the Shelf wow. Lengthwise, weight, wise, all that.
00:09:24 - Jill
Yeah. That really does put it in perspective, because I was thinking to myself, trying to imagine, okay, ten inches. Wow. Size of an Elff on the Shelf.
00:09:34 - Lyssah
Wow. And as we're coming up into the fall season and Halloween, candies out a lot of candy bags, if you look at them, are just at a pound or a little over a pound. And so if you wanted to wonder how much a micro premium weighs, just pick up one of those bags of candy.
00:09:53 - Jill
Wow.
00:09:53 - Lyssah
And it's mind blowing. So that started us, like I said, on this crazy ride, 393 days in the NICU, and she was literally, I think, the first thing they told us when we got down there is she is feisty. Even though she was super sick, she was not just laying there trying to let the vent work for her, she was trying to do it on her own. Someone came near her, she was kicking and batting, and she was going to take on the world. We didn't know at the time that pretty much no one thought she was going to make it through the first night, and then no one thought she was going to make it through the first few days, and then no one thought she was going to make it through the first week. And then on day eight, we did have a pretty intense crash where they said, you might want to come in. She made it through that, and she started her little testimony of, like, Watch What God Will Do, and that was really, I think, the phrase that really it was a banner, Watch What God Will Do the whole time. In fact, we even had that written on a sign at one point in November. So she was three months old, not even to her due date. Her due date was November 28th.. So we hadn't even gotten to her due date yet, and she had a lung collapse, and she had a really bad code event where basically for the first time, we saw every neonatologist on the floor run in all the RTS. She was in a little pod that was maybe like a seven x eight square, and there were probably 20 people inside trying to get her stable again. And at one point the doctor, the neonatologist on shift, said, mom, why don't you come sit by her? We know she likes that when you sit by her, which was “doctor speak” for, we got nothing left, come be by her, kind of a thing.
00:11:56 - Jill
Yeah.
00:11:57 - Lyssah
And so we sat by her bedside all night. And her sats were, her O2 saturations were hanging in the 40s, very low, super low. And then somewhere around maybe 02:00 A.m., I watched like it was she'd go between 45 and 46-45, 46-47, 46-47, 46, and we literally watched her climb from the oxygen at a time back up into the 80s and 90s.. And the next morning who had been on shift, they kind of looked around. What am I going to see when I look around the corner? And they saw her, and they saw her sats climbing up, and they were like, literally, the doctor's face when he walked back in was like, oh, okay, well, let's see what we can do. And it was one of those things where that sign we had that said, Watch What God Will Do. At one point, they were like, after this point, they were like, even if she gets past this and recovers, she's always going to be sick. I don't know that she'll ever be stable enough to go home. There was a lot of naysaying starting to come out. And so we took that sign and we put it right on her vent. So anyone who looked at her vent had to be reminded like God was doing something, and she was going to blow all of our minds. And that's what she did every time. Every time medicine said she wasn't going to come back. Every time the pulmonary hypertension that she was diagnosed with flared up, God always brought her back around and used as a way to really give. This little baby who couldn't even speak, couldn't even cry because she was intubated, gave her the opportunity to show people this love and this desire to work miracles. And we had people who were like, I don't pray anymore, but I'm praying for her. And people who were on different sides of the political realm, who would fight, who would be connecting with us and being like, hey, we're all praying. And we just watched her tear down walls. It was the craziest thing. Here's this little baby who's just living her life in an isolette, and God was using her. And to the point. Like, if we fast forward, when we had our most recent daughter, we actually had her. So Juju was in two different NICUs during her life, and there's a third big hospital in town that also has a large NICU. And so we delivered our most recent daughter, Aili, at that other hospital, kind of getting ourselves away from the trauma places. And it was funny because she did have to go to the NICU for about 36 hours after she was born. And when we were down there, the nurse who was down there looked at us, and she's like, you're Jubilee's parents?
00:14:48 - Cameron
We didn't know.
00:14:49 - Lyssah
And we're like, yeah. And she's like, I followed her story. I had a 25 weeker, and I followed her story, and it's so, like, here we are in a completely different hospital, and we ran into two or three people who knew who our daughter was, and she'd never even been in that hospital. And so it was just mind blowing to see how God used her little life to bring hope to other people, and to bring encouragement and to, again, tear down. It didn't matter what side of whatever you were on or what you believed about whatever everyone was on Team Juju, and it was just such a beautiful thing to be part of. And she had, again, the feisty personality. She was so much fun. She side eyed people all the time. She loved to do things that people did not expect her to do. So normally, a micro preemie is on very restricted stimulation. And for her, though, she would drop her sats when people walked away and they got quiet.
00:15:49 - Cameron
She wanted people as soon as we walked back, she'd be up 100%, and doctors would come in and be like, let's not talk here. We're like, no, please have your meetings here. She loves it. They would try and do what they thought would work, and then someone would be like, Well, I mean, we could do this, but it doesn't make sense that that would work. And then they'd do it, and it would work. And she extubated herself at less than six weeks old, scaring the RTs, because she shouldn't have been strong enough to do that. And she just constantly surprised people. Constantly. She would look at you. She had the oldest, she was an old soul. Like, when you looked in her eyes, it wasn't like you were seeing a newborn. She didn't look at things like, oh, what's going on? It's like she looked at things like she was trying to say things, and she was just the coolest kid. Sorry, I could talk, obviously, forever … there were times when I was holding her, and it's just like, I feel like God was looking at me through her eyes.
00:16:47 - Jill
Wow. I'm just so enthralled listening to her story, and I'm just imagining her, what she must have been like, and what a gift she was to you. And then also to all those nurses and doctors that cared for her, and the respiratory therapists and all the different people who were coming in and out. What a gift she was. It's just amazing. Yeah.
00:17:13 - Lyssah
At the hospital where she ended up, she spent most of her time at Vanderbilt. A bunch of them wore her picture on their name badges or her footprint. And it was funny because I'd see people and I'm like, I don't even know who this person is. They've never been her nurse. People from other wards would come over and get updates and would stop by, and she had people signing up to be her primary, and we had the best primary team and the best neonatologist team, and even people who were like, you know how some people are kind of just crusty people. They don't get along with a lot of people. Even they liked her, they would stop by and be, like, our primary nurse for her first birthday that we got to celebrate that with her before she passed. She's actually doing great during that time. There was this one guy who he was I think he was an X ray tech, and he was always cranky. He was known for being, like, the cranky guy. And even he wrote her a note and put it in her book and that her primary nurse was making for her. And it was just like, he would stop by and be like, how's my just she really just was like to know her was to love her.
00:18:31 - Cameron
She pointed people to Jesus every day.
00:18:33 - Jill
She really did, yeah, I can see that. Just I'm just amazed by her story and how such a tiny, tiny little girl could have such a huge impact on so many people. It's amazing. During this year that she was in the NICU, what were your conversations with God like during this time?
00:18:59 - Cameron
I would say for me, it was, Lord, you have a plan in all this. You have a purpose, but right now, in this moment, I don't see it. And early on during her life, it was a gradual, slow motion surrender of, you know what? I'm not supposed to know why. I'm just supposed to lean in and press in and just like Lyssah said, watch and see what I will do. So a lot of those conversations were centered on the theme of learning to cope at the end of our rope. And just like Juby's name suggests the implication of forced rest, it was really prophetic into the posture we needed to take. There was a lot of other things going on. While Jubilee was starting out her life, we had moved to Lyssah's parents for a couple weeks, and I'll loop this around just a second, but we were displaced from our home as Lyssah recovered. We finally moved back into our home when Jubilee was about two months, and we had a freak flood due to a malfunctioning washer, so we had to get new floors throughout the house. We moved back to her parents, and it was about a six month journey or six month adventure there where we didn't even have our own home. And during that time, the NICU sort of became an extension of home. So a lot of those conversations were, okay, everything seems to be falling apart. What are you trying to teach us? We had a car accident during that time. It just seemed like everything that could go wrong was going wrong. And yet the one constant throughout the whole voyage was this vibrant baby who was a feisty fighter, who clearly God's power was being made known in and through her struggle. Just like, Lord, how do you want to use this as part of this story? Because clearly, it was a gift that we could tell in the moment, but we knew that, okay, something profound is happening in front of us. Someone who wasn't supposed to live past day one, who kept confounding people. I think our conversations were why this was happening. And we quickly be like, okay, we're going to give ourselves some peace in punting the Why. We're going to punt the why out, and we're going to be like, how do we commission with you as we almost pre grief as we struggle to make sense of that? So I would say, yeah, to answer your question, God was teaching us early on, if you're stuck between a rock and a hard place, just let me be your rock. As I say I am. Let me be your rock. If you feel, like, in a rock and a hard place, and it's okay, I'm almost intentionally putting you here so that any place of dependence outside of me is gone. I am ridding you of any place of codependency as this is happening so that you could truly enter into the perseverance that I need you to demonstrate to the world around you. And that came in July, November 10. I remember the date when both Juby's lungs collapsed, probably. If I had to capture a single moment of her entire 393 day life, it stands out that if I was trying to capture all of it in one moment, it's like Lyssah laying hands on one side. What do you call it? Her bed isolette. Yeah. You were laying hands on one side, laying hands on the other. It's just like we don't feel peace at all. Like, the buck doesn't stop here. This is not how the story ends. So we prayed with expectancy. We prayed with confidence, we prayed with courage, and it just came out. So we just became conduits.
00:22:49 - Lyssah
I think for me, a lot of the conversations were just I asked why a lot? Because I'd be lying if I said I didn't. But even then, I feel like the two things I can remember saying over and over were, I trust you, and realizing I was praying that in faith, even as I was praying it, as it was true. I trust you. And then I always had in my head the picture of Shadrach, Meshach and Abednego when they look at the king and they say, our God can save us. But even if he doesn't, and I feel like learning to pray, I know you can. And even if you don't, I trust you, and get to a place where I meant it. It stunk having to walk that out on September 18 and go, all right, we didn't. You didn't do what we thought you were going to do, but we still trust you. There's still something here that you're doing, even if we don't see what that is. I think we got to a point where we were like, man, she made it this far. She's totally coming home. Especially because we lost her after she had been doing the best she'd ever been doing. We lost her. Suddenly we were talking about coming home. We had completed our classes, we had started her medicine weans and that was going to be the big thing, that medicine weans and getting in home care was going to be our two big obstacles for her coming home. And so when we lost her at that point where everyone, I think had finally gotten to the point where they were like, okay, we can hope. Yeah, this is happening. And then to turn around and lose her, it was really like I can remember even that day being like hearing the Holy Spirit, like, do you still trust me? Will you still trust me? And I can remember sitting there holding her, knowing that she was passing and being like, I don't know, but I really feel like for me that's where the I trust you. And even if you don't do what I think you're going to do or what I want you to do, and really asking for strength to be able to walk through that, if that was the case, because I can promise you there was no way that was anything that either of us could have done in our own strength. That was something that the Lord had been laying groundwork for many times over.
00:25:26 - Jill
Yes.
00:25:26 - Cameron
I'll add one more thing to that and then sorry, I'll let you share your next question, just because I think it's important to say when I'm thinking about other parents who have gone through a similar journey a lot, of my conversations those first few weeks and months probably were similar to what Jacob must have been saying when he wrestled with yes God in Genesis. I believe it was 32. That's essentially what we were doing. We were wrestling to terms. We weren't just coming to terms with what was happening. We were wrestling to terms. And there was times where I felt like my faith was never stronger. And then the next day you could feel like, I'm the weakest most is I don't want to say Job's wife, curse me and die, right? But there were some times where it's like, what did we do, God, to offend you? And so it was just embedded in part of the wrestling process. But we had to like, listen, I had to have these conversations regularly in order to keep our sanity intact. It's like there is purpose in this and that purpose is going to be a story of restoration, reconciliation to the world. We just don't know exactly how that's going to look. It's just all the more reason to kind of almost sit back and just let God go before us.
00:26:43 - Jill
Yes. This is so interesting to me because a lot of ways our stories parallel each other. Our daughter was 16 when she was diagnosed with terminal brain cancer. And we walked that road with her for a year again, doing all of the treatments, all of the things that we needed to do, the radiation, the chemotherapy. We had hope all the way up until the end that she might be the one person who survives Glioblastoma. But we wrestled with all those exact same things. Our conversations with God are so similar to what you guys went through, and I just didn't realize as we started this conversation how similar our journeys really were. Jubilee was much younger than Hannah, but actually, Hannah's personality sounds a lot like Jubilee's. She was an old soul as well, and she was one of those know, all of the doctors and nurses just really built a special relationship with her because of the attitude that she had as she fought her battle. And so it's just really fascinating to me how similar our stories are. The age is different, but you know what? That doesn't matter. We wrestle with the same kinds of issues and the same struggles, and God has used our girls, both of our girls, in mighty ways. Thank you for sharing Jubilee’s story with us. I was going to ask you, and you've already answered that question, whether Jubilee was a name you had already chosen, because it's so perfect for her. And I love that her name with the middle name, Jubilee Nileen, is celebration of surrender. And that's the point that you had to reach with the Lord, isn't it? You had to reach the point of surrendering so you could move forward.
00:28:40 - Lyssah
Yeah. And what's funny is you think you've gotten there and then no, there's more. And I think that's one way that she'll always be an active part of our lives is even now, we're coming up on a year, our first year. We just celebrated our first birthday without her on the 21 August and September 18 will be her first anniversary of her first heavenly birthday. And I still feel like every day is still choosing to surrender and choosing, am I going to celebrate the surrender or am I going to resist it or resent it, or is it something that I'm looking at as a, I'm defeated, so I surrender, or I'm dependent, so I surrender? And there are some days when it's totally the defeated one, I've just got nothing left. And it's like, fine, you've got it. But really trying to stay in that place of being dependent and surrendering. And I'm grateful for her for teaching us that and continuing to teach us that and for the Lord for using her in that capacity.
00:29:59 - Jill
Yeah, it's amazing what we can learn from our daughters or what we can learn from our children.
00:30:04 - Lyssah
It is.
00:30:05 - Jill
Yeah. You would never imagine that's the case, but when you have one like Jubilee, you can learn so much from her.
Now, you've just recently had another baby. You've referenced that. Earlier, and we can hear her a little bit in the background, which is just so sweet. I love it. Tell us. Yes, well, tell us a little bit about Aili.
00:30:27 - Lyssah
So Aili was our third surprise because we were really done after Jubilee. And I guess that's the one thing, tell God you're done, and he'll be like, no, right.
00:30:37 - Cameron
That banner was still in play last year, even after she passed.
00:30:41 - Lyssah
Yeah. So Jubilee passed in September and we found out in November that we were expecting, which, if you've been pregnant after losing a baby, whether it's miscarriage, stillbirth child loss, whatever the case is, it's terrifying. And so, again, it was almost like Juju part two, only it was a lot more of kind of one thing we say about childbirth is like, you can't unknow things. Once you've walked through that same thing with NICU or medically Complex kid, once you know things, you can't unknow them. And so it becomes an even bigger battlefield in your mind, you know what I mean, where the enemy likes to try and put a lot of fear. And I'd be lying if I said that I overcame that well, most of the time, because I was a wreck.
00:31:34 - Jill
I can imagine that's got to be terrifying.
00:31:38 - Lyssah
It was. But we really felt early on like the Holy Spirit spoke to our hearts that she was going to be a restoration of what was stolen. Because one of the things I think that we grieved a lot about Juju because she was our last can't see me, but I'm doing air quotes our last right. Was that we didn't get to hold her until she was 23 days old. And then anytime we held her early on was with the help of a nurse and an RT and having her placed on us and not really being able to touch her. It wasn't until the very end that we were able to even just pick her up out of her bed once she had her trach and we were trained and they were confident we could do it and stuff like that, you know what I mean? So to live with your last child in this place of medical complexity attached to wires and life support and all that kind of stuff, there was a lot that felt like it had been stolen from us. And so early on, we felt like the Lord told us that this pregnancy was going to be a restoration. And it was the easiest pregnancy I've ever had. Aside from the emotional and mental stuff, we felt early on that we wanted to name her something referencing light, which I've seen. I feel like a lot of other parents who have babies after loss. There's a lot of Lucy's and Lucas and a lot of Referencing Light, because when you've lost a child, it is it's the darkest place you've ever been. And so Aili means bright, shining light, and then her middle name is Nissi. Nissi love. And Nsisi, obviously after Jehovah Nissi, which is his banner of victory and love. And we just felt like God was making a declaration of his victory and love through her. So, yeah, it was really this place of having to confront everything over again. She was a repeat c section. She ended up going down to the NICU for about 36 hours. And so it was really funny to go to have been in the NICU for a baby who was literally like a fear checkup. Yeah. And then to go in there and be like, oh, she just needs a little bit of high flow oxygen while her lungs dry out.
00:33:52 - Jill
Wow.
00:33:52 - Lyssah
Okay. All right. But it was just we joke that we had one baby that didn't get to graduate the NICU because she was in there for so long, and then we had another baby who didn't get to graduate the NICU because she was only in there for less. So it was just funny to have those two spectrums of having the sickest baby in the NICU and to have the healthiest like she was able to come back up to our room in the hospital. You know what I mean? So it's been really cool to see the Lord say, okay, this is restoration. She's by far been our best sleeper, smoothest pregnancy. Smoothest pregnancy, best sleeper. And it's been really healing for our kids, I think, because when we told them we were pregnant with her, we actually wrote them a letter from Juju and basically said, don't worry about me, I'm okay here in heaven. I love hanging out with Jesus. It's the best. But I know you really wanted a baby, so I talked with Jesus, and he's sending you one. And our seven year old still references that letter that he got from Juju, but it's really how it felt. If I could totally see Juju being up there, being like, I'm good with being here, y'all. But my siblings waited a year for me to come home, and they got to meet her twice. And so they have been the most doting siblings on Aili, and she's kind of been you can tell she's been a really healing place for them because it's allowed them to talk about things, because when I was pregnant, they would ask, is Aili going to have to stay at the hospital? Is Aili going to die? They would ask the questions, and I feel like it gave them a little bit of direction to process through some of that, you know what I mean? And now they're very happy and love her almost too much, trying to protect her a little bit from all the love.
00:35:49 - Jill
Right.
00:35:50 - Cameron
I would say to kind of piggyback off that to me, her homecoming date was probably more exciting than the day that she was born, being straight up, because we know what it's like to give birth to life in a high risk setting. But I remember I didn't get emotional the day that Aili was born. I got emotional when I took her home and I thought about my kids and what it'd be like. It was like the punctuation of that Ministry of Reconciliation, that redemptive narrative that at the beginning of Aili's life was the only thing we were holding on to. It's like, this does not make sense. God, this is hashtag Too Soon. We are not ready for this. Maybe we would have gotten there, but we just had this idea closing out 2022, heading into this year. We need to get through our grief first and kind of almost get it out of our system a little bit before we move on. And God's like, no, through this new life, through Aili, you're going to show people how you can process through mourning and grieving simultaneously … expecting, with hope. Those two things could be concurrent. Expecting with hope and mourning and grieving at the same time. They're not two separate things that have to happen one before the other. They're two parallel streams. And she taught me that. She taught us that early this year.
00:37:11 - Lyssah
Sorry, you said that. And that just reminded me of actually, when we were at the While We’re Waiting retreat the last night we were walking out to the S'mores Bar or whatever, I was standing and I was talking with some of the ladies because we just finished the men's and women's kind of breakout thing and we started talking and it was funny because we're all sitting there. We've barely known each other for over 24 hours, but these people feel like family, and it's like there's just this deep connection already that you're just like and I remember sitting there because we've walked through some stuff after losing Jubilee, like, people not knowing there's a whole lot of levels of grief. And to be able to come to a space where there wasn't any need for explanation, it was just you're received, you're loved, you connect with people. Everyone's story is different, but everyone is like, you understand the same thing. And it's like we were talking, and I remember having this thought of, this is the gift of grief in that you understand a community that you never would necessarily ask to be part of. Right? But it is the truest form of community that I've ever experienced in my life that it literally lets you be as you are, mess and all. No one in a grief community expects you to be good or perfect or whatever. They receive you in your mess, in your craziness, in your emotions. It is literally come as you are and be received. And I remember thinking, why do we struggle with this so much as the body of Christ? And I was sitting there thinking, how can we find a way to apply that gift of grief that allows for such seamless community and love? Into that wider body. Who hasn't necessarily? Where in our faith is that same seed? And what you just said there, it's that duality of grief and hope and of I grieve my sin, I grieve this broken world, and I hope for something that's still on its think. Sorry, I was just putting that together.
00:39:28 - Cameron
Yeah, no, that was one of my takeaways of the retreat weekend in Moscow. This is a preview of where we're headed. This is like God's intent of the church, among other things. So I felt the very same thing you were describing was God's original design and intent for communities from the beginning of time. And we just tapped into that and bonded, obviously through like minded people and experiences. And the rawness that I think that while we're waiting to such a good job of preserving through the people it serves, it's like this is a safe place to be raw and transparent and honest with people. And when you start adding layers of honesty, god's love shines brighter through that.
00:40:16 - Jill
Yeah, absolutely. Yeah. You just described exactly what we experience at every one of these retreats that we have the opportunity to facilitate. People come in with all different kinds of loss and it doesn't matter. The bonds that we form, they form rapidly and they are strong and they are long lasting. I think that's, like you said, that's the way the body of Christ should be all the time. And we are able to see it just kind of in microcosm at every one of these retreats and it's just such a gift. So I'm glad you guys were able to attend.