[00:00:00] Rayna Neises: Welcome. This is Rayna Neises, your host of A Season of Caring Podcast, where we share stories of hope with family caregivers breaking through the busyness and loneliness of life to see God even in this season. Today, I’m excited to introduce you to our special guest, Laura Atkins. Laura lives in Seymour, Missouri with her husband Scott, and she has a daughter, Harper that’s 12, as well as a 21-year-old son Hayden, who’s married and lives in Warrington, Missouri. They also have a son named Wyatt who was diagnosed with Coats Plus Syndrome at the age of 10. Prior to his diagnosis, he had symptoms of cerebral palsy that would be typical of someone who was 26 weeks. However, he had an abnormal brain scan and after genetic testing, they were able to diagnose him. Coats Plus Syndrome is a terminal illness that causes calcification in the brain, brittle bones and gastrointestinal bleeding, all of which Wyatt had experienced during his short life. Laura, thank you so much for being willing to come here and share with us a little bit about Wyatt and what caregiving looked like for you during that season.

[00:01:08] Laura Atkins: Yes, thank you.

[00:01:09] Rayna Neises: So tell us a little bit about him and what it looked like in caring for him.

[00:01:15] Laura Atkins: So Wyatt was born at 26 weeks. He was one pound 12 ounces. And we were in the hospital with him for four months. And within those four months, he was diagnosed with an eye condition. He had to have some surgeries on his eyes and he had some other surgeries that he had to have. So right off the bat we were in the hospital and we were dealing with the hospital life and the surgeries, he got to come home and lived a pretty normal life as far as health health wise. He was diagnosed with cerebral palsy, which is common with premature babies. And so he did have some trouble with walking and mobility. So we had to get him some braces and just do the little things like that. It wasn’t normal, but it was like expected ’cause he was premature.

[00:02:11] Rayna Neises: Yeah.

[00:02:12] Laura Atkins: and then he actually fell down our stairs when he was five and he had a concussion. We we had a CT scan done and they found that his whole brain was just covered in calcifications which was totally abnormal and couldn’t be explained. So from that point we took trips to St. Louis, which again, you know having a, a baby and having a toddler and having a a a a child going to the hospital is not easy.

[00:02:46] So, but it kind of got, we, we got used to it and, and Wyatt was very, like, he was a very special, special boy because he was so happy all of the time and it didn’t matter what was going on. If he was, having a procedure done or going to a doctor’s appointment, he always wanted to make everybody laugh and smile. And he had, he had this thing about him to where he wanted to make sure everybody else around him was okay. And so that always that always sticks with me because he had that from the time he was little to the time that he passed away. So you know, after, after we did see that brain scan, we did notice that he declined as far as physical movements. So at that point it was just kind of advocating. So whenever you’re a parent. Of a child with special needs, you have to advocate and you have to figure out what you need to advocate for. So,

[00:03:55] you know, get getting equipment for him. Because at first we just bought a transport chair off of Amazon. Like he’s gets tired easily. We need a transport chair to just move him around. And, and then it got to the point, okay, well he needs a wheelchair now because he has to be in it for longer periods of time. He cannot walk anymore because his leg fatigue. So he ended up in the wheelchair.

[00:04:20] And then, let’s see, around the age of 10, right before he got diagnosed, he fell and he broke his leg and he, you know, we didn’t think anything of it and got it casted it healed. And then after that, he broke something. He broke the other leg. I think it was the lower leg that broken. From that point on, we dealt with, with breaks. We would break, we would heal, we would break the same spot again. He broke his tibia, his fibula, he. Femur. I mean, we had, I don’t even know. And it was just in little instant, like he would just fall and it would break. In the meantime, we did get that diagnosis of Coats Plus Syndrome. That was done by St. Louis Children’s Hospital. We did genetic testing and that’s how they found it.

[00:05:21] They told us at the time that only 10 people in the world was that had the diagnosis of this particular syndrome. So it’s extremely rare, which made it even harder to know how to care for him because we didn’t know what to expect. And at this point, you know, the only symptom that he had of the syndrome was the cognitive decline. Which, and when I say that, I mean the, the brain was, you know, his ability to move and his ability to use his motion was, was declining. He was losing his ability to speak. So you know, whereas when he was little, he could talk, he started to not be able to form words because he couldn’t get the vocal cords to work or his didn’t know the muscles in his mouth to form the words that he wanted. So that, that was another big part. Of it was trying to figure out ways to communicate with him. So that was difficult. As far as the bones go one particular, the one particular leg that kept me breaking, I. And we tried different surgeries, we tried different devices. They had they tried external fixators, which is basically a device that goes around your leg and there’s pins that go into the bone itself to hold it together. And they did that twice. Yeah, it was terrible. I would say, you know, talking about caregiving as far as that goes, whenever I felt like I could probably go into a hospital and be a nurse and I don’t have any nurse training,

[00:06:55] Rayna Neises: Yeah.

[00:06:56] Laura Atkins: of that type of care. But they did decide, we did decide to amputate. So he did have an amputated leg below the knee. Let’s see. After we did that, it was kind of like a big relief because that was kind of what we were dealing with was the leg and after the amputation, it gave him just this he felt better. He was able to just kind of chill and, you know, so that was good.

[00:07:29] But then not very long after is when the bleeding started. And , it’s whenever you have. A child that has that type of sickness or that type of syndrome, whatever, whatever you’re dealing with, I guess you just have, you have a way of being in tune to their, to their, bodies and, and how they’re acting.

[00:07:51] And so I kind of could tell, you know, we,

[00:07:55] Rayna Neises: definitely.

[00:07:56] Laura Atkins: that he wasn’t acting right and we took him to to the doctor and his blood, his red blood cell count was like terribly low. And they, they knew then that he was bleeding internally. So that started a whole new process of bleeding, staying in the hospital for a week, coming home, being okay for a while, bleeding again. So again, you know, just. Being in the hospital and helping him deal with what’s going on and feeling scared yourself, but having to give that reassurance knowing he’s scared, but then at the same time he’s trying to make, he’s trying to make me feel okay. There’s just so many memories. ’cause my husband unfortunately, you know, somebody has to work and, continue

[00:08:57] to make the money. So he had to work and I went to the hospital and just so many days and nights of music ’cause he absolutely loved to listen to music. And I think that brought him a lot of comfort. And he loved watching SpongeBob, so lots of memories of SpongeBob.

[00:09:21] Rayna Neises: Yeah,

[00:09:22] Laura Atkins: him smile and be happy

[00:09:27] Rayna Neises: So it sounds like, with the premature birth, there’s obviously that scariness of just watching him develop. Is he gonna make it all of that? And then it was like you reached that point, you get to come home and you’re thinking, okay, we’re kind of doing better, right? The developmentally he was talking and all those things were in place.

[00:09:42] But then, like you said, at five, you started noticing those things. What a long time to go from five to 10 before you really knew what was going on. And then once you get that diagnosis. There’s no good news with it, so that’s really difficult. So it’s definitely a really long period of just having to take each thing as it comes and try to figure out how to, how to bring him comfort, how to navigate that as a family.

[00:10:07] That’s a lot.

[00:10:09] Laura Atkins: And it’s a, it is, it’s a rollercoaster. And I still remember even when he was, he was probably three or four I would say, and we were at the pediatrician’s office and the pediatrician said, you know, he’s probably always gonna live with you. And just that statement that he made. It’s like, no, he’s not like, he’s gonna be okay.

[00:10:32] He is gonna, he’s gonna catch up. He was premature. He is just, he’s gonna catch up. He’s gonna be okay. So yeah, the realization of, you know, what’s, ’cause between five and 10 it was what’s happening? Why does he have these calcifications for a while? Did he get a virus when he was in utero?

[00:10:51] I don’t even remember the different possibilities they came up with. Having some type of a terminal genetic illness was never something that I could have imagined until they started to talk about like, you know, it could be something genetic. But still, I mean, never thought terminal. So

[00:11:13] Rayna Neises: I can’t imagine.

[00:11:14] Laura Atkins: it was hard.

[00:11:15] Yeah. It was really

[00:11:16] Rayna Neises: And I, I love how you mentioned just his disposition because one of the things that I love about God, and I love to remind myself about God is I. That nothing ever surprises him. That as a person, I’m always surprised, you know, like you said, it’s, it wasn’t on my radar. A lot of things surprise me, but I love the fact that God’s never surprised and he’s so intentional in everything. And so he made Wyatt just the way he is for a reason, you know? And so share a little bit more about him and just favorite memory.

[00:11:45] Laura Atkins: So, I don’t even know. I don’t even know. I have so many memories of him. Just, Wyatt just had this thing where anywhere we would go. His smile would attract everyone around and, and everyone, like we were in our hospital room, everyone came in just to see wt and it’s like he impacted so many people with his joy and the things that he went through. And to have that. Just pure joy. I mean, that’s what it was. It just, it just exuded from him. And it, I don’t know. I feel so very blessed and, you know that’s what, whenever I think about, you know, when I’m sad or, or I’m thinking about, the bad things that we went through is, you have to remember, that’s not what he would want. He would be upset if he knew we were upset because that’s how it was. If we,

[00:13:00] he knew anybody was sad, he would get sad. He had so much empathy for a, for a little guy, and I, you’re exactly right. God made him just, just the way he needed to be and he was perfect and. I don’t know. It’s just, it was amazing to see him battle through the way that he did.

[00:13:30] Rayna Neises: Well, and it’s awesome that memory continues to bless you. And like you said, it’s just what you need. Anytime you’re feeling sad or you’re feeling overwhelmed, that his memory can help bring your, bring you back and, and bring that joy back. So I love that.

[00:13:44] Reaching the end of our caregiving season is so difficult. In some ways, we are oftentimes thankful the struggle that our loved one is going through ending, but most of all, we just missed them so much. I really appreciate Laura being vulnerable and sharing her memories with us of Wyatt. Today’s episode has been brought to you by A Season of Caring Podcast. I know you’ve heard of it. You’re listening right now, but can you tell someone else. One of the easiest ways to share recommendation would be for you to give me a review on this podcast platform you are listening to right now. A few simple words, a rating can make all the difference in helping another caregiver find the hope that we share in our stories of hope here at A Season of Caring Podcast.

[00:14:32] So do it right now. Stop right now. Take a minute and just share a review. It would really mean the world to me. Thanks for being one of the listeners and if you would like to be a guest on A Season of Caring Podcast and share your story of hope. Definitely let me know, email me at Rayna, R a Y N a@aseasonofcaring.com. I would love to talk to you about sharing your story with the listeners of A Seasoning, Caring Podcast. Let’s get back to our conversation with Laura.

[00:15:05] What would you say was one thing that surprised you most about being a caregiver?

[00:15:11] Laura Atkins: I would say, you know, whenever you think about being a caregiver, let me see how much you rely on people because it was me and my husband. But we relied on family members so much because you have to do so much whenever you are caring. Whenever he was at home he, you know, he got to where not, it was a little bit, maybe a year before he passed away, it got to where he couldn’t really leave the house very much. And so, we had to. Rely on other people’s support.

[00:15:46] But also another surprising thing to me is that it wasn’t hard. Like it was so easy to take care of him, and it was normal to me. And that’s, that’s kind of what I think about when I look back. It’s, my life is completely different now than it was. Our lives, like my family’s lives. Is completely different because we had him, but then it was, it was our life and it was so easy. And we did it because we had to, but also because, that’s what we needed to do, you know, for him. We did all kinds of things. We fed him, we bathed him. We, you know, had to, when we, he got old enough, he had a feeding tube.

[00:16:33] When he was not able to eat by himself, he couldn’t eat anymore. So he had a feeding tube. So we dealt with that. And I look back and like all the things that we did and like, my gosh, my husband and I look at, we did all these things and like, I can’t believe it because, you know, it’s kind, it’s pretty crazy. But it was easy ’cause it was Wyatt and yeah, so I guess that’s probably the most surprising is if I were to ha if I hadn’t have had him and somebody else would’ve said, the same exact thing that we did, I would’ve said, how in the world did you do that? You know what I mean? So, yeah, that’s, that’s what I think.

[00:17:16] Rayna Neises: Well, and I think you used the word natural and I, that’s one of the things that I remember in caring for my dad. One of the things that worried me the most, my, both of my parents had Alzheimer’s disease, and so when I was younger, I cared for my mom and, I could bathe her and take her to the restroom and feed her and do all of those things.

[00:17:34] And it, it was really natural. But as. I was significantly older and my dad and I were kind of friends, it just felt like, oh my gosh, I’ll never be able to do those things for him, because it just, it felt like the relationship was gonna be different, but in the moment it wasn’t, it was, he needed help and, and I’m gonna help him, so I do think that. We just see that need and step into it and wanna make them as comfortable as possible and, not let them struggle and, and those kind of things. So I do think it can be really natural. So that’s a great point.

[00:18:07] I know God had to be right there with you throughout the journey, but can you think of a special time you could share with us and when God really showed himself to you guys in the middle of your caregiving?

[00:18:21] Laura Atkins: I would say that God showed himself the most to us at the end of Wyatt’s life. Because of course he was there throughout, and I know, like we talked about, he made Wyatt the way that Wyatt was intentionally, and I feel like that he was always with Wyatt. I, I feel like Wyatt had a special thing about him. And towards the end, actually it was two days before he passed away he felt like going outside which was very special. He got to go out. He had a a chair that was motorized. And so he made a trip around the house in his motorized wheelchair. He ran into the fence, which of course was hilarious for him.

[00:19:10] ’cause, know. Running into the fence was funny and he kept, he kept going even though he was against the fence. that was hilarious. And then he blew bubbles. He enjoyed the sunshine, so, he, and then he came in and he crawled in his sister’s bed and he thought that was funny ’cause he was hiding from her. So, you know, that happened two days before he passed away. And then the day he passed away, he and I truly believe that he, that he got the strength from God to do this because it was, it was just, it was over with so quickly. He was anemic so many times and we had to keep giving blood transfusions. And I could tell that he was anemic and I wanted to, to get him some blood and the hospice, ’cause he was in hospice at this point. And the hospice nurse told me, it is not going to do any good to give him more blood, you know, we’re just prolonging his life at that point. He wasn’t, he didn’t have a, a life that was, you know, he was just laying in his bed and he was, he was, he didn’t feel good and, and he was, he was ready and I knew he was ready. But we don’t want to. Give up, you know? And that was so hard. But that day when she told us that he was, in the process, family came, he had the strength to give every single family member a hug. I remember he took my hand and he kissed it, which I will never forget that moment. And then my aunt actually knelt down beside his bed and started talking about heaven and who was in heaven. And I feel like, because I had never told Wyatt that he was gonna pass away and that never a discussion ’cause I didn’t wanna scare him. So my aunt started talking about heaven, who was gonna be there.

[00:21:20] And, Wyatt started crying because he was scared. But then we had the priest was here as well. And he came in and he started praying. And as soon as he started to pray, Wyatt stopped crying. And I feel like he was completely at peace. Because after that he just, he laid there and we hugged on him and we kissed on him.

[00:21:49] And he, he, passed away at three o’clock in the morning that next day. So I feel like God showed us, you know. Through comforting him and also just giving him the strength in those last couple of days to do those things, it was pretty amazing

[00:22:14] Rayna Neises: To make some amazing memories for you guys. Yeah.

[00:22:19] Laura Atkins: Yeah, it was amazing.

[00:22:23] Rayna Neises: How long ago was it, Laura?

[00:22:25] Laura Atkins: He passed away on July 10th, 2021.

[00:22:31] Rayna Neises: I’m sorry. I’m sure it will always be with you, but I’m sure it feels like yesterday in some ways,

[00:22:37] Laura Atkins: Yes. Yep. It does.

[00:22:41] Rayna Neises: and that’s. Part of the crazy thing about grief, I think, is that how much time can pass and how much we can miss them, but at the same time how much we just feel like we just, saw them. So, and grief is a hard thing. Thank you so much for sharing about him. It sounds, he sounds like such a, a blessing and such, so much joy around him.

[00:23:03] Is there one thing you wanna share with caregivers to help them in their caregiving journey? Maybe something you learned either early on or somebody who’s later in their journey.

[00:23:12] Laura Atkins: I would just say don’t be afraid to ask for help. Don’t be afraid to rely on people because other people wanna help. So yeah, that would be the biggest, the biggest advice I would give.

[00:23:26] Rayna Neises: Yeah, it’s not an easy thing to do, but you kind of didn’t have a choice. How old was your youngest? During, I mean, she’s 12 so she was really young during this whole process.

[00:23:36] Laura Atkins: yeah, she, yeah, she was young, but she is resilient. Yeah. I’m, and that’s another thing I, I will say too, is raising children with a kid that has a disability makes them extra special. Because they’re amazing. And, you know, my daughter Harper, she even took part in the caregiving too. She would, you know, help with his tube feeds. If the machine was beeping, she’d go turn it off. She’d comfort him. So, and my son, everybody and they just, they’re incredible human beings and I really believe that it teaches compassion and empathy and you know, so, yeah.

[00:24:18] Rayna Neises: Yeah. The empathy and compassion is at a level that some people will never experience whenever it’s right there in their home with them and with someone that they love so much. So I’m sure that was really impactful for both of them.

[00:24:31] Well, thank you again, Laura, for sharing your story and just sharing a little bit about Wyatt with us. I know as family caregivers, hearing other people’s stories help us to relate in a level that, other people just can’t relate to. So we really appreciate your time today.

[00:24:45] Laura Atkins: Thank you.

[00:24:47] Rayna Neises: Thank you for joining us for Stories of Hope with Laura. A Season of Caring Podcast has been created to share stories of hope for living content, loving well, and caring without regrets. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.