In this week's episode of This is the Gospel, after Julie's 14-month-old son Jonah passes away in a tragic choking accident, she is plagued with insomnia and nightmares. Following a prompting, she begins to share her feelings on a public blog, but little does she know that that blog will connect her to two women who will change her life in unexpected ways.
Our first son, Jonah, came into the world 10 days late. It was my first baby and I had all these ideas about what his birth would be like. My whole pregnancy had been so good, and I had felt so healthy and strong. All of our ultrasounds that we had were fine. We never had any indication that there would be any problem or any challenges for our baby.
It was just this beautiful experience to be pregnant and to feel him move inside me. I was sure that I was just gonna let him come on his own terms. Ten days after his due date, my doctor said, "No, we need to induce you."
That day was so exciting. The birth was good, but when he was finally born, the doctor put him up on my belly. When I first looked at him, I could tell right away that something wasn't quite right. I didn't get very much time with them because they whisked him off my belly. All of a sudden, there was this flurry of activity around us. The respiratory therapists came in and they took Jonah and kind of moved him away from me. I remember my mom coming over and comforting me, and I just didn't even know what was happening.
I just remembered seeing his little ears. They looked almost like little flower petals that hadn't quite opened all the way. My husband, Jordan, was over by the nurses and he was kind of watching what was going on, and he came over to me and I remember him saying, "Julie, he has the most beautiful lips." I think he was in this moment of trying to process what we were experiencing. But it turned out that (Jonah) had a lot of problems with his facial structures. He had a cleft palate, his jaw was underdeveloped, his cheekbones were underdeveloped, and his ears were not fully open, like they had just started to develop and stopped midway through that development.
We didn't know what caused it or whether he'd be able to see or whether he'd be able to hear. We didn't know if he would have any kind of mental delays, but we loved him so instantly. It wasn't until the next morning after a night of changing diapers and trying to figure out how to feed him that our doctor came in and told us what his diagnosis was. He told us about Treacher Collins syndrome, which is a syndrome that affects the facial structures and development of the face. The other thing the doctor told me is, "I'm almost 100 percent sure that you are the carrier of this genetic disorder."
It was good to know what he had because we knew that he would be able to see. He wouldn't be able to hear with the help of a hearing aid. We knew that he wouldn't have any kind of developmental challenges. But I had this place in my heart that just hurt so bad because I knew that I had carried this thing . . . that wasn't my fault, but I felt the strange responsibility for being the carrier of that gene—that any children that we tried to have in the future would have a 50 percent chance of having the same experience that our sweet Jonah was having.
We knew that he was going to face a lifetime of surgeries to correct some of those things that he had to deal with, and it was all so overwhelming. I tried to put on a brave face and I tried to be really present and to be optimistic. But as soon as I could get up and I got into the shower—that's where I just fell apart. I just prayed that Heavenly Father would help me to know how to move forward.
The distinct impression that I received was that Jonah deserved to have a joyful mom. That there was a lot that we didn't know, and there was a lot that I couldn't control. But I could control how I approach the experience of being this mom. And so that's what I tried to do.
After a while, we just didn't think about his syndrome very much. We were just normal parents raising this little boy and that was beautiful. People were attracted to him and they wanted to know about him. My husband and I are—well, especially my husband—we're kind of private. We're not the kind that really reach out, but with Jonah, people just came to us. It was a heart-opening experience to watch how people just loved him right away.
But there was also a realization that people could be cruel. As he got older, we had more experiences of people stopping and staring or children saying things that were hard. He was young enough that didn't really affect him, but, you know, we wondered how that would affect him as he got older. That was a challenge.
When Jonah was 14 months old, my friend had invited us over. She wanted to can spaghetti sauce, and our kids would play together while we made the spaghetti sauce. That morning, I had felt this hesitation that I couldn't put my finger on, but for some reason, I just didn't really want to go. She was my dear friend and I love spending time with her and I couldn't understand why I wouldn't want to get out of the house and go there.
But we went, and Jonah played with her kids and we made our spaghetti sauce. After a couple hours, she needed to go and pick up her oldest daughter. I said, "Okay, that's fine. I'll watch the kids."
We were in the backyard playing. Almost immediately after she walked out the door, the kids had been eating snacks and Jonah ate a fruit snack.
I could tell right away that something was wrong. I could see it in his eyes that he couldn't get any air and I knew that he was choking. I was holding my friend's new baby and I have these children around me and I looked around and there was a blanket on the ground. So I put the baby down and I scooped Jonah up and I tried to do the Heimlich maneuver and tried to you know, pound this fruit snack out. It wasn't working and I could feel his body just go limp in my arms.
I started to panic. I grabbed my phone and I grabbed him and I knew I just went to the front of the house because I thought if I can get out there someone can help me. I left all these kids and this baby in the backyard and ran to the front of the house and laid him out on the driveway and called 911.
They did their best to help me and I was doing everything I knew how to do to help him. I don't think it was very long before the ambulance got there. But just as I looked at him, I had the strongest confirmation I think I've ever had in my life, and the confirmation was that he was not going to make it.
My friend came around the corner to see these ambulances and fire trucks at her house and she ran out and she didn't know who was in trouble. When she saw that it was Jonah, she said, you know, "This is the time to have faith and this is the time to be strong." And I said, "He's not going to make it."
Within a matter of 30 minutes, I'd gone from being the mom of this vibrant, lovely boy to holding him in my arms and his spirit was so clearly gone. That was the most devastating moment of my life.
I'll never forget leaving the hospital that day with my husband, Jordan. We got into his truck and we didn't have children with us. It was so surreal and strange. We just drove home together, crawled into bed, and cried all night. We just cried all night.
Then the next day people started showing up at our door. They came until we went to bed that night, they just kept showing up. We just all grieved together as a community and as a family—this tragic loss that we had all experienced.
The weeks and months that followed Jonah's death were just surreal. At night, when I would try and fall asleep, I would see in my mind the experience of losing Jonah, over and over again. I prayed for Heavenly Father to help me to be able to let that go and to be able to sleep. I had a strong impression that I needed to write it down. So I started by writing everything I could think of in my journal. And that night, I slept.
Then I had the impression that I needed to write it in a more public way. That felt really scary, but I decided, since I had this time, that I would begin sharing my experience and start a blog. I remember pressing, publish, and just feeling sick inside, like just feeling like I put my whole heart and soul out into the world, and not knowing how people would receive it. But that blog, and that ability to write became so therapeutic to me.