I’m Carrie Kinkade, part of the Good Grief group started by CSPC’s Sarah Stewart. It’s for mothers who’ve lost children or have terminally ill children. Here’s my story.

“When he was just six days old, the doctors told us Everett was showing signs of heart failure. He had open-heart surgery at three months. Even after that, he was so fragile, so sick. He never left the hospital until he was about seven months old. So from the very beginning, it’s been a journey of overcoming. Everett is 6 now. Besides being born with Down syndrome and a heart defect, he’s battled lung problems, heart problems- you name it. Anything medical, besides neurology or oncology, we’ve probably had to deal with. When he finally came home from the hospital, he was on two liters of oxygen at all times. He couldn’t even eat normally- he had to be fed through his jejunum because we were terrified of aspiration and reflux. Everyday life was critical care. It was a slow road. He didn’t sit up until he was 13 months old, didn’t eat by mouth until 18 months. But little by little, he made progress. By the time he was two, he no longer needed oxygen during the day. By two and a half, he didn’t even need it at night unless he was sick. For the first time, we felt like we were gaining some ground. When he turned three, he started preschool. He was still in therapy three times a week -pretty typical for a kid with Down syndrome- but he was thriving. And then, right after he turned four, everything changed. He got sick with adenovirus, which wasn’t that unusual. He’d had hospital stays before for respiratory issues, so at first, we thought this was just another one of those. They even sent us home after a week. But he wasn’t getting better. We went back to the hospital. A week into that stay, things took a turn for the worse. Everett was struggling, and they moved him to the PICU. A few days later, he was on a ventilator. I remember one of the doctors saying, ‘I’ve never had such a hard time sedating a child.’ He was fighting. Even when it wasn’t in his best interest, even when his body desperately needed rest, Everett was fighting. And that was just the beginning.

Somehow, things got worse. Everett caught another virus -rhino enterovirus- while he was still fighting adenovirus. And then his belly started to swell. At first, we didn’t know why. We ran tests, X-rays, CT scans. Still no answers. A couple weeks after he went on the ventilator, his blood pressure dropped suddenly, and they rushed him into emergency surgery. That’s when we found out Everett’s small intestine had perforated. The way it happened was strange- his small intestine had wrapped over his colon, almost like a Band-Aid. So when they imaged it, they couldn’t see the perforation. Meanwhile, his body was shutting down. That morning, the doctors came to us and said, ‘We don’t know if we’re coming back upstairs.’ I knew what that meant. Our son, who’d already battled so much, might not survive. They took out two-thirds of his colon. He was just so sick. After surgery, we tried multiple times to wean him off the vent. But his body just couldn’t do it. By May -two months after being placed on the ventilator- they placed a trach. Everett spent eight months in the PICU. Eight months of near-losses, complications, and setbacks. The staff put a sign in his room that said King of the Curveball, because if there was a rare complication, Everett would find a way to have it. The doctors would say, ‘This is the course we think he’ll take.’ And then Everett would go in a completely different direction. Sometimes you could even see the doctors get stumped, and that is not a good feeling. We almost lost him more times than I can count. Many times, he just spiraled, and no one knew why. Maybe he aspirated. Maybe it was something else entirely. You grab at anything, trying to make sense of it. In November, after eight months in the PICU, Everett finally came home. On a trach, on a ventilator (and is still on both), but home again. Today, Everett’s the most fun, joyful person you’ve ever met: loving his brother so fiercely (even when they fight) dancing and singing like no one is watching- life of the party. He’s been through the worst, yet he ministers to us all the time with his good attitude.

When Everett was born, I never thought I’d have to ask, ‘How are we going to handle it if he passes?’ But those are the kinds of conversations my husband Stephen and I have had to have. I’ve grieved so many things about Everett’s life- not just the past two years, but from the very beginning. I’ve grieved the typical childhood he’ll never have. I’ve grieved the playdates we have to cancel because the slightest sniffle could send him to the hospital. I’ve grieved the isolation that comes with living in a world where most people just don’t understand what this life is like. That’s why the Good Grief group has been such a gift. Often, when I walk into a room of people who love me, I know they care, but sometimes I have nothing to add to the conversation. I can’t relate. My world doesn’t look like theirs. In 2023, I spent most of my time in a hospital. In the past year, I’ve barely left my house. I’m happy their lives are typical and they haven’t been through what I’ve been through. But when they look at me and ask, ‘What’s going on with you?’, I feel like the bummer. They don’t get it- some of them want to get it, they just can’t. But in the Good Grief group, I don’t have to explain. I can say, ‘This sucks and I had a really crappy week,’ and I don’t feel like a downer. Because everyone else in the room has been there, too, or someplace really similar. To be in a room that gives you space to say, ‘These really hard things have happened to me,’ that kind of understanding is a lifeline. When you’ve been through something like this, you respond to people differently. You just do. That’s another thing about the past six years- God’s been at work through all the trials, changing me. I’m a pretty prideful person. 12 weeks into my pregnancy, when we received Everett’s Down syndrome diagnosis, I feel like God was starting to get my attention. He was like, ‘You don’t have it all together. You need Me.’

Before Everett was born, I wanted it to look like I had everything together. I had motherhood all planned out. Then, the Down syndrome diagnosis at 12 weeks. At 24 weeks, the heart defect. And my whole world changed. I was mad and depressed the entire pregnancy. (Now, six years later, I would take the Down syndrome in a heartbeat if it meant we didn’t have to deal with all the other medical challenges!) But God knew what I needed even when I didn’t. I thought I was strong and capable. But Everett has shown me just how much I need God. He has rocked my world in ways nothing else ever has, and made me realize, ‘You are so little, but you serve such a big God that you will get through this.’ The first time Everett was in the hospital, I read James 1 every day: ‘Consider it pure joy whenever you face trials… the testing of your faith produces perseverance.’ I have persevered through things I never thought I could. And there were moments I didn’t think I would. But God carried me through. I used to think of God’s goodness in terms of the good things that happened to me: a job offer, a smooth pregnancy, a happy family. Now, I see His goodness everywhere. I see it in all our medical care (the amazing doctors, therapist, and nurses I never would have met!), in the other moms I’ve been able to minister to, in the ways I’ve been stretched. I never would have chosen this life. But I wouldn’t trade it now, because it’s assured me God is good- no matter what. That doesn’t mean I don’t sometimes question ‘Why?’ or ‘How?’ After all, how am I supposed to grow without asking the hard questions? I’ve always struggled with an all-or-nothing mindset; with always wanting to have the answer. I think God has been showing me He’s not afraid of my anger and questions- they don’t mean I don’t have faith in Him. I’m just going through something that doesn’t make sense, and that’s okay. It isn’t supposed to be this way, but it is because we live in a broken world. I’ve never prayed more or read the Bible more, and I’ve never sought Him more than I have the past six years. He’s good, I need Him, and I’m just so grateful for the gift of trials and the places they have brought me.”