Carrie welcomes her longtime friend, Erika Weise, a mother navigating the complexities of caring for a son with a trach and ventilator. Erika shares her personal insights on acceptance of this new life vs. living in denial, finding meaning in adversity, and creating a support network for families facing similar challenges. This down-to-earth discussion will inspire you with their stories of friendship and the unwavering belief that, even in the face of adversity, everything will be okay.
Ep.156; January 30, 2024
Key Moments:
[3:17] Birth stories and diagnosis
[15:51] Dealing with doctor's negative perspective
[18:55] Parenting a 20-year-old vs. a child
[20:00] A friend who will walk with you
[22:50] Using this to help someone else
If you enjoyed the show:
Carrie welcomes her longtime friend, Erika Weise, a mother navigating the complexities of caring for a son with a trach and ventilator. Erika shares her personal insights on acceptance of this new life vs. living in denial, finding meaning in adversity, and creating a support network for families facing similar challenges. This down-to-earth discussion will inspire you with their stories of friendship and the unwavering belief that, even in the face of adversity, everything will be okay.
Ep.156; January 30, 2024
Key Moments:
[3:17] Birth stories and diagnosis
[15:51] Dealing with doctor's negative perspective
[18:55] Parenting a 20-year-old vs. a child
[20:00] A friend who will walk with you
[22:50] Using this to help someone else
If you enjoyed the show:
Carrie M Holt: Hi there, it's Carrie today, and you're listening to episode 156. This episode is entitled: How God Creates Purpose and Meaning from Our Pain. This month on the podcast, we've been covering the topic of what we wish we would have known.
I was honored and privileged to have my friend, Erika Weise, on the podcast. She and I have been friends for almost 25 years. In this conversation, we had a great discussion about denial, how to find community, and how we can find purpose from our pain. Erika has a lot of wisdom, and I'm so excited for you to hear about how God brought about our friendship because He gets all the credit and the wisdom that she shares from parenting a 20-year-old son with a disability. Enjoy this episode.
Carrie: Hi, Erika. Thanks for being here. I’m excited to have you on the podcast.
Erika Weise: Yeah, thanks for having me.
Carrie: First of all, if we can remember, do you remember how we first met?
Erika: Well, I remember that you knew my mother first because we went to college together. You worked at the bookstore with my mom, and my mom would talk about you, but I had never met you before. So I didn't meet you, I don't think, until we were at the same church together and we were in the singles group. That's how we got to know each other. You were engaged, and I was dating my future husband. We went out on a double date together. I think we went mini-golfing, maybe?
Carrie: Oh yeah, we did.
Erika: Can you remember that?
Carrie: I remember we went out on that date, and then just after that, we hit it off, and we started hanging out more. I remember taking turns going to your apartment in our house after you and Carl got married, watching the Amazing Race every week or something.
Erika: Oh yeah, I remember that. That was fun.
Carrie: I think that dates us a little. Then fast forward. I want to tell our listeners that Erika and I don't share our story to brag about how we've been able to support one another but to tell the story of God's grace and goodness and how he orchestrates every detail of our lives. We end up going on vacation together. We start talking about how we want to have babies. I feel like I told you right away that I was pregnant with Conor, our oldest.
Erika: Yeah, I think so. I'm trying to remember. I think you told me, and then I found out I was pregnant very soon after that. It was so fun to be pregnant together, and us talking about all of our plans and dreams. That was a lot of fun.
Carrie: Erika and I are due three weeks apart with our first kids. My due date, I think was July 12th or 13th. When were you due with Evan?
Erika: I think August 1st. The beginning of August.
Carrie: We're just a few weeks apart. I'm scheduled to finally be induced on July 25th in the morning. I'm gonna go in; I'm almost two weeks overdue. And then you call me on Thursday.. I think we had plans to go get lunch together because we were usually craving hamburgers.
Erika: Yes, that's right. I had a regular OB appointment that morning, and I had been having some issues. I went to the OB and he checked me out and he said, you know, I really think you need to go right away and be induced today. I remember calling Carrie, and I said, “Well, I can't go out for lunch with you today because I have to go the hospital and get induced and have this baby.
Carrie: I remember being so mad. I'm a little competitive. I'm not quite that bad now, but I thought this isn't fair. She's going to have her baby before me. As if It really matters. Then our sons ended up being born 16 hours apart in the same hospital.I am almost positive that Evan was born at like 10:16 PM or something like that. My contractions started, and I remember sitting in the waiting room. Bruce and I finally went to the hospital at about 1:30 in the morning. My contractions were five minutes apart, and they had no beds. I'm sitting in a waiting room with your husband one side and my husband on the other, and they're talking while I'm breathing through my contractions. Can you tell our listeners how you were introduced into the world of being a special needs parent?
Erika: So when Evan was born he was very tiny. He was five pounds, 14 ounces. He had a very weak cry, but really, we didn't think anything was wrong with him. We thought he was the sweetest baby. He slept all the time. When he cried, it was this really tiny little cry. We thought, this is amazing. When he was about three months old, he decided he didn't wanna eat anymore. He didn't nurse very well at all. I would keep trying to nurse him, and he wouldn't. He would arch his back and cry and that wasn't like him. Something was not right. I remember taking him to multiple doctor's appointments, and they would say, well, maybe it's reflux. We really don't know. I was giving him reflux medication, trying to figure out why he wasn't eating. I went to a different pediatrician because my pediatrician was on vacation, and this pediatrician looked at him, and said, “I really don't like the way he's breathing. Something's funny about the way he's breathing. I think you need to go and get him checked out as far as breathing.” Well, we went, we got referred to the pulmonary clinic. They were looking at him and they said, he needs to be admitted right now because something is wrong where his diaphragm had pushed his liver up into his lungs and collapsed one of his lungs. Basically he was choosing between breathing and eating because he couldn't do both and he was having to choose breathing.
We realized that something really was wrong with our baby, but honestly, when we went to the hospital and they said, well, we're gonna have to push down his diaphragm and tack it down so he can breathe so his lungs will open up again. You should be in the hospital for about a week and everything should be fine.
Once we do the surgery, he won't have any more issues. He'll lead a normal life. So we're going into this hospital experience thinking it was only going to be one week long. Then we'd have our perfectly healthy, normal child back with us. After the surgery, they put him on a ventilator as a precaution because he had surgery on his diaphragm. When they tried to get him off the ventilator, hiis oxygen would plummet. He would have trouble breathing. He’d go into respiratory distress. They said, “Well, maybe he's so weak because he hasn't eaten in a long time. Let's give him a week or two, feed him, get him strong again, and try taking him off the ventilator again.” They did that, but every time they tried to take him off the ventilator, he would go into respiratory distress again. I remember one of those times he did that, I was holding him, and all of a sudden he crashed and he turned blue in my arms. It was a really scary time. We were in the ICU for quite a long time. That's when we started realizing that there was something more going on with him, that it wasn't just a problem with his diaphragm, that he really had something else going on. We were starting to notice that his fingers and his toes were curling and getting weaker.
They ran a battery of tests. They tested him for botulism, West Nile virus, polio; they just couldn't figure out what was going on, but they knew there was something deeper going on with him.
Carrie: I remember when I think you guys left Columbus and went up to Cleveland to Rainbow Babies and had all those tests done up there too. How old was Evan when he finally got a diagnosis?
Erika: While we were in the hospital, even going up to Cleveland, we were trying to find answers to what was going on. We knew at one point that he wasn't able to be intubated through his mouth or his nose for much longer. We were going to need to make the decision about getting him a trach. That felt very permanent to us. It felt like. You know, something's really, really wrong if we need to have a trach for our baby. But we were able to go home three months after we went into the hospital; we were able to take him home, but he was a much different baby when we got home than he was when we went into the hospital. He was dependent on a ventilator 24 seven, he was tube fed, he had wires and tubes everywhere. So he was a very different baby.
We still didn't have the diagnosis at that point, even when we went home. It wasn't until a few months later when my sister-in-law was doing some research online. She's a nurse. This was very interesting to her to try to figure out what was going on with him. She found a very rare muscular, a neuromuscular disorder that she felt like fit what was going on with our son. She told us this information and we were able to go have our bloodwork sent to Germany and get it tested for this genetic disorder. That really didn't come back till he was over a year old when we finally figured out that he has what's called Spinal Muscular Atrophy with Respiratory Distress, which is a very rare genetic disorder. At that time, they said maybe 30 people had it.
We really didn't know the prognosis of what it was going to be like. We just knew at that point we had a child that couldn't get off the ventilator and he was reliant on tube feeding, couldn't eat by mouth. We just had to take it one day at a time at that point to know what was going to happen.
Carrie: How did it feel during that time of just the unknown of not having a diagnosis? Did it bother you that you didn't have a diagnosis until he was after a year old?
Erika: No, I think in a way it helped us, this sounds funny, but to maybe have some kind of denial at that point that well, since we don't have a definite diagnosis, there's a chance maybe he could get better. Maybe this is just a temporary thing where he can get better. Maybe we'll start seeing improvement. Maybe we'll start seeing more movement in his arms and legs. I feel like the diagnosis was definite. This is what he has, he's not gonna get better. That was a hard part for us. I think, having a diagnosis that it was more permanent at that point.
Carrie: It's interesting to me, because this month on the podcast, we're talking about what we wish we would have known. You and I had this discussion about, our journey was so different, I had a prenatal diagnosis, and so now, or each of us have a son. Evan and Conor are the same age. Then we get pregnant around about three months apart with our second kids and those boys are healthy. Our oldest sons are friends, our second sons are friends. Then I get pregnant with Toby and all of a sudden, I know what your life looks like with a trach and with a ventilator and a feeding tube. Now I'm reading all this stuff about how kids with a Chiari crisis can have all these things. I remember praying so hard that Toby would not have these things. I guess Evan and Toby are about three and a half years or something, somewhere around there. You and I've talked about how, first of all, I'm so grateful that you didn't have a baby when I had Toby because, you know, I needed you. But we've talked about how we're wired so differently. I was glad that I knew when I was pregnant.
Were you happy you didn't know before you were pregnant? You talked a little bit about that denial and I can totally see that. I think a lot of our listeners who are listening now have gone through that same thing. There's a permanence sometimes in a diagnosis, but are you glad you didn't know in the early days of pregnancy?
Erika: Yeah, I think I am glad that I didn't know. I think for me, it would have been something I would have probably obsessed over and thought about and maybe not enjoyed as much of the process at the beginning, the labor, the delivery, the brand new baby stage. I would have been very worried about it and thinking about it, obsessing about it. I was able to enjoy those for at least those three months when we thought everything was okay. I think for me, just as, you know, as things happened, it was kind of built up slowly in a sense.
I was able to deal with one thing and then the next thing happened. Okay, we'll deal with the next thing. And it wasn't all at once. Even then having the diagnosis later, I was able to get through the first part of learning how to care for him before it was the permanent, “this is what he has, he's gonna have it for the rest of his life, it's terminal and not knowing after that what the prognosis would be.
Carrie: I remember that you had a doctor say something really hard to you when Evan was still intubated. Are you OK with sharing that story? Would you share that?
Erika: Oh, yeah, absolutely. I remember sitting in the ICU with Evan and my husband, Carl, and we were with a doctor, one of the doctors at the ICU. We had to make that really hard choice of whether to put a trach in or not. He had been intubated for six weeks. And at that point, we had to make that choice. Even though it was a hard decision, as I talked to this doctor, she said, “Well, maybe you should not trach him and let him go. Because sometimes I think it's better for kids like this to play in heaven rather than suffer here on earth.” As she said that, Evan was looking through his crib bars and he was smiling at her. For me, thatit was such a hard thing because I thought, no, my baby has so much life in him. He's smiling at you right now. There's a lot there. II know everybody has to make their own choice. And there are times where that is the right choice. I understand doctors have to present all the options. I get that. But at that moment, what I needed her to say was, “If you want to trach this baby, you can do this. You can be a mom of a baby with a trach. I believe in you. I know that you can learn how to care for him and it's gonna be okay.” I needed that encouragement at that moment and not somebody to tell me that maybe I should let him go.
Carrie: Fast forward a little bit, Evan's now 20, and he's in college. What has your journey looked like just in the last 18 to 20 years?. Can you give us a little bit of an overview of some of the ups and downs of the last several years with Evan?
Erika: Sure. I definitely think in the beginning it was all about his medical care. We had to learn how to take care of a child with a trach and a ventilator. I mean, he's on the ventilator 24-7. So we had to learn all the medical side of caring for him, which was exhausting. As he's gotten older, we've had to deal more with the emotional side. We started out with that physical, the medical, and now it's emotional. When he was eight, nine, ten, he was having emotions about not being able to do what the other boys were doing, not being able to play soccer like his younger brother, not being able to play video games like his friends, because his hands were weak. So there was a lot of the emotional side. And now as he's gotten older, it's interesting, just to see the different stages that we're going through. Right now I would say that there's a lot of anxiety because now that he's older. He knows the risks of things that could happen to him. I mean, if he comes disconnected from his ventilator, he cannot physically put it back on. He cannot breathe. If there is nobody there, then he will not be able to breathe., and he knows that. There are things now that he's going through that cause him more anxiety than he had before. But you know, he was always a happy-go-lucky kid and he still is. There are things that are going through his mind now about what if, what if, which we didn't have to deal with before. That's the new part of our journey, I would say, is dealing with his anxiety and his questioning of what happens if this happens.
There's different stages, definitely, through this journey that we've been through.
Carrie: I want to go back and talk a little bit more about the importance of community and the friendship that we've had through the years. I was going through my like box of letters and cards. I kept everything from those early days when Toby was in the hospital for two months. I found this letter from you and I'm gonna try to read part of it and not cry. The interesting thing is this is dated January 4th of 07. This is actually just a few days before my birthday which is probably what inspired you to write it, but it's also before we knew that we were both gonna have kids with trachs, ventilators and feeding tubes, which is just crazy to me. Honestly, I don't want to say you were prophesying, but just some of the things that you were speaking that have come to pass. It says this:
I was thinking about Toby and what a door of opportunity God has opened up to you. The things we experience in life, I believe are meant to help us grow spiritually and also open up ministry opportunities. Because you were a teacher, you can relate to other teachers and those in the education world. Because you are a wife and mother, you have a ministry to wives and mothers. Now that you have Toby, God has opened up a new world of hurting people. This particular group of people need so much encouragement and are hungry for hope. Sometimes I found that it can be quite draining. They need a lot at first and I didn't want to take the ministry on, partly because I didn't want Evan to be a special needs kid too late. Also, I didn't feel like I could deal with other people's burdens when I had so much of my own. But I have found that being able to help someone in tough circumstances has given me purpose, and it gives our situation meaning too.
I think that is so important. We've talked a lot about how obviously God had a plan. He had a plan when I was friends with your mom, and I knew her in college that our lives would overlap. Our oldest two sons just have this amazing friendship. Eo you remember writing this first of all?
Erika: Yeah, I actually do. I actually do remember.
Carrie: Why do you think we struggle against that ministry sometimes that God's calling us to when we go through something hard?
Erika: Well, I don't know. I think that it's hard because you're so engrossed in what you're going through at the moment that you're not thinking about how God can use that because it's so much right then. I really feel like if you do change your perspective and think, God, I know you're allowing this to happen. How can I use this to help somebody else? How can I reach out? Because that does give it purpose. That does give it meaning, then you can reach out and help somebody else that might be going through something similar.
Carrie: How long did it take for that perspective for you to change? Was it gradual or do you still kind of vacillate back and forth between those things?
Erika: Well, definitely when we were in the thick of things, we were in the ICU. Things were happening quickly. That wasn't something I was thinking of at that moment. But once we got home, things settled down, and I started to be able to open my eyes a little bit and see, I'm not the only one here that is going through these things.
There are other moms that have special needs kids. I wonder what their life is like. I wonder what they're dealing with and kind of getting out of myself and my issues and all the things that we were dealing with and looking outside of that and saying, okay, how can I help somebody else? Because I know how it felt when I was in the thick of things and we were just living day to day. We were lacking sleep, we didn't have any sleep. We didn't know what was gonna happen. How can I help somebody else that might be going through that same thing? Then it feels easier then to deal with what I'm going through, being able to reach out and help somebody else.
Carrie: Were you involved in any support groups or anything between the time of Evan's birth and when you and I started our support group together?
Erika: No.
Carrie: Toby comes along and then I'm finding myself in this world of Spina Bifida but not spina bifida because all the kids that I look around and see that have Spina Bifida don't have trachs, don't have vents, don't have nursing care, don't have feeding tubes. They're not dealing with the medical complexities. I remember feeling so alone and so isolated. Thankfully, I had you. Can you explain the umbrella of Evan's diagnosis and why you didn't feel like you guys fit in there too?
Erika: Yeah, definitely. So what Evan has is called Spinal Muscular Atrophy with respiratory distress. We've kind of been lumped into a group with other people with spinal muscular atrophy or with muscular dystrophy. Really what Evan has is very different than those other neuromuscular diseases because for him, his diaphragm was paralyzed first. He was on a ventilator right away and then it's his hands and his feet and it kind of moves in from there. We didn't feel like we belonged with any other group. They tried to get us to go to different clinics at the hospital that would relate to those other groups. Nobody really knew about Evan. They didn't know how to help him, how to treat him necessarily because it was just such a rare, unique disorder that he had.
Carrie: Then we find this connection and our group just, I don't even know how it really grew. It never got very big, but basically we just started to get together once a month. What we had in common was that our kids were medically complex and that most of us had nursing care in our home, and that did allow us to get out at night alone without our kids. It was a huge blessing. I personally get questions about finding community. What advice would you give with a new mom who's just struggling to find community and connection? And she feels really isolated because maybe her child has behavior issues or autism, extreme versions of autism, or they live in a really small town and it's hard to find people who are similar to her?
Erika: Well, I would say number one, pray about it. I think that God will open your eyes and allow you to see things that maybe you hadn't seen before. Maybe there is somebody in the small community that you didn't even realize was dealing with something. It might not be exactly what you're dealing with, but it might still be a special need that you can relate on some level with that person. I remember we took our kids to the zoo. Do you remember this?
Carrie: Yeah
Erika: We were just having fun at the zoo. And then we noticed this mom, and she had this baby with a trach. Anytime we saw a child with a trach, we're immediately drawn to that person and we started talking to the mom. We started talking about what agencies do you have for nursing care? Then we had similar agencies. So we had these connections. That just happened organically. That was us just out in the community, and sometimes I do think, moms have special needs, need to get out of their comfort zone, out and see because you do run into people and you can. If you're out of your comfort zone, you can be talking to them and see what's going on with that other mom and make that connection. We were able to make that connection even at the zoo and kept that relationship with that mom.
Carrie: Yeah, we’ve been friends with her for a long time. I think you've got to look sometimes for those opportunities and be willing to open up and reach out. I think so often we expect people to come to us because we feel so alone. and Iit's like you said, it's hard to bear somebody else's burdens when you have so many burdens yourself. Look outward instead of looking inward all the time. And when you can look around a little bit and kind of look up over the horizon of your own pain and your own suffering and say, I need to connect with that mom because she's probably hurting just as much as I am. We don't have to have everything in common. When you start to look for those opportunities to not isolate yourself and I mean, what do you think that requires of us to do that, to look outside of our pain?
Erika: Well, I think the one thing that we need to remember is when we aren't focusing on our own pain, it doesn't minimize the pain that we're going through. It doesn't mean that we're not going through pain. It doesn't mean that we aren't taking care of ourselves and taking care of what's going on in our lives, but to pause and be aware of other people around us. So that's not all focused on us. That's hard, I know, because It takes so much time and so much energy to deal with what we're already dealing with. Sometimes, I feel like I can't help somebody else because I am going through so much on my own. But I do think once we are able to do that and find somebody else that we can really encourage, even if it's just something small, like just a little connection we can make, that I think gives what we're going through purpose and meaning and makes it feel like there's a reason why we're going through this and to be able to help somebody else.
Carrie: I can remember too just practically, I would tell my social workers through the Spina Bifida clinic, if you ever have a mom who they've got a baby with who goes through this and then ends up with a trach and a ventilator or some version of that, you need to send them my way because we do have this group, and I think it does require us being vulnerable. I think sometimes that's hard as moms because to be vulnerable takes energy.
Erika: Another note on that too is that we have to be okay if the other person doesn't want a conversation, doesn't want to connect. Because there are times at certain points in the journey where you're still trying to figure out what's going on. Like the point where I was where I don't want to be called a special needs mom. I don't want that label. I think there are moms at that point where, so if you reach out and you try to connect and you get a brick wall and they don't want to connect, that's okay too.
Give it time, maybe later they'll be willing to open up and talk about it. But they might be at the point where they don't want this right now, and they don't want to associate with other moms as special needs kids. So you have to be okay with that too.
Carrie: I know we've talked about this a little bit already. There is just that stage of denial in that cycle of grief. And honestly, I feel like we experience it many times throughout our journey. Iit's very normal and very accepted, but I think it is really important for us not to stay in denial. Would you agree with that and why or why not?
Erika: Yeah, absolutely. Well, I think for one reason, if you stay in the denial, then you are kind of inhibited from reaching out to other people. You're not able to because you're just kind of stuck in that phase of I don't really believe this is what's going on in my life, but once you accept that and are able to have that peace about it, then I think it's easier to reach out and help somebody else.
Carrie: I think sometimes we have to lament this to God because it is a change. I don’t want this, and especiallyI don't want this label. But then when we can give it to the Lord and cry out and kind of move past that stage, and not that we're not gonna experience it again, but move through it, we can go, okay, now I know I need support and help. Then I think sometimes we're more willing to receive help and then give help to others. So this has been such a great conversation. I'm just so grateful to have you on the podcast finally after all this time.
Our friendship spans about 25 years, which is just crazy. I'm so grateful too. Our boys are at the same college and they have this amazing friendship. Iit's just been such God given, I think on both sides. But one last thing. The theme for this month has been, looking back and what you would go back and tell yourself. If there was one thing or maybe two, something that you would wanna go back and tell yourself, what would it be?
Erika: It's okay. It's going to be okay. No matter what happens, it's going to be okay. And God can use this. God can use whatever is going on in your life and he can use it for good, for ministry, for helping other people.