Growing up in a special needs family can sometimes cause siblings to feel invisible, but there are ways parents can take the time to help all their children have the attention they need. In this episode, Sara interviews her oldest son, Connor, discussing both the positive and negative of growing up in a special needs family and the importance of the foundation of faith.
April 19, 2022; Ep. 82
Timestamps & Key Topics:
If you enjoyed our podcast, please...
Growing up in a special needs family can sometimes cause siblings to feel invisible, but there are ways parents can take the time to help all their children have the attention they need. In this episode, Sara interviews her oldest son, Connor, discussing both the positive and negative of growing up in a special needs family and the importance of the foundation of faith.
April 19, 2022; Ep. 82
Timestamps & Key Topics:
If you enjoyed our podcast, please...
Sara Clime 0:00
Welcome to Take Heart We're so glad that you're here. I wanted to take a moment to let you know that we have free resources, and we would love to share them with you. You can find them on our website at www.takeheartspecialmoms.com.
Sara Clime 1:16
Hi, it's Sara this week, and I have my oldest son, Connor here with me. This month we are talking about siblings. So Connor is 21, and he attends college a little over an hour away. He was 12 when his brother, TJ, was diagnosed with Duchenne Muscular Dystrophy. Welcome, Connor.
Connor Clime 1:35
Hi, thanks for having me.
Sara Clime 1:38
So my first question to you, let's just start at the beginning. Do you remember the diagnosis? Do you remember us telling you about it?
Connor Clime 1:48
I vaguely remember it. It was a while ago, but a lot that I can remember was just this sudden feeling that I knew my brother was different, but I didn't exactly know how.
Sara Clime 2:03
Do you remember, was it sad, was it scary, or was it just kind of you just knew it was different? You just really didn't know what to expect.
Connor Clime 2:11
I think it was just I didn't really know what to expect. I didn't feel sad, and I wasn't scared, but I also wasn't happy. It was this kind of confusion where I didn't know what was going to happen. I knew he was different. I just didn't know how, and I guess in a way that just made me confused.
Sara Clime 2:33
Okay, so really it wasn't so much fear. I think sometimes as parents, especially at such a tender age of 11 at the time, we didn't really know how much to tell you. Quite frankly, we didn't know that much ourselves. Looking back on it, do you feel like you would have liked to have had more information, or do you like that it was more age-appropriate?
Sara Clime 2:36
I think I liked that it was more age-appropriate. It allowed me to if I wanted to learn more about it, I could do my own research or ask questions. Keeping it to where I was able to understand it, but not necessarily grasp the full concept of it definitely helped in me in becoming okay with it.
Sara Clime 3:26
Do you feel that at the time of diagnosis when we told you that life completely changed and upended or was it just something new entered the picture?
Connor Clime 3:40
Nothing really changed. I think that probably had to do with the idea that I didn't see a physical change. I still saw TJ. I didn't see him as now he's TJ with the disease. For me, nothing, nothing changed. It was just something new was added.
Sara Clime 4:06
Right. Well, now remember at that time, we had to tell you certain things that 11-year-old boys probably needed to know. You can't punch your brother, you cannot throw your brother. You need to be very careful wrestling your brother. Do you remember any of that?
Connor Clime 4:24
I really don't. Although I do remember one time it was at a beach where I and TJ were just playing around, and I decided to push him into the ocean. All of a sudden, I have mom rushing in and saying you can't do that to him. You got to be more careful. I didn't really understand at the time what I had done because to me it was just we were playing around, just a little bit of fun. To you, now looking at it, it was I could have hurt TJ.
Sara Clime 5:01
Right. I look back on that moment too. It is one of my favorite videos because I just happened to be videoing you guys while you did it. It was just four months after diagnosis. I think it was hard for us as well because there wasn't a transformation right then, there just isn't. At that time, it was just a word that was attached to him. So I remember getting that way. I remember saying, "You have to be very careful with him." I remember going back to the hotel room, and now as an adult, I can share this with you. I remember thinking had nothing to do with Duchenne, it had everything to do with an 11-year-old, pushing a seven-year-old into the ocean. I think that instance was fortunate in the fact that I remember thinking, Okay, I cannot tie everything to Duchenne. Some things are just meant to be not about the diagnosis, not about the disease. What were some of your most prevalent feelings about having a brother with special needs good or bad?
Connor Clime 6:12
The good, I would say, in sort of a weird way, I kind of became closer to TJ. Instead of like, going out and punching and pushing each other as normal brothers do, it was more of we just sat down, and we would play games together or watch movies together. In a way, our bond kind of developed in that loving way. There were definitely also some times where I felt kind of alone, where TJ was in the spotlight, and I didn't really feel like I was getting any attention. Looking back on it now, I don't think I really mind. I definitely don't mind having attention. As a kid, that's what sometimes we strive to get. We want that attention, and we want to be recognized. We might go do some stuff, like pushing our brother into the ocean or just give him a good punch to where he would yell. I would say those would be the two main emotions that I could really remember.
Sara Clime 7:31
I know, we're kind of talking about when you were younger, closer to the diagnosis, but is it fair to say that the feeling of being alone, or maybe alone is not the right word, but that it carried through your life even through high school? Is that fair to say? I know your brother and I traveled a lot. We were gone quite a bit, especially during your high school years, those two years where we flew out to Baltimore once a month for a few days. I remember that being taxing on me emotionally because I was missing things that you got to do. I'd miss games or things like that. Did any of those instances come into play the times when your dad or I were at therapies or clinical trials or doctor's appointments or any of that? Do you remember any emotions around those, or was it just part of life?
Connor Clime 8:29
I feel like going to the trials and going to the doctor's appointments, I never really felt alone there. Sometimes it was a nice breather because I got to be by myself. What teen doesn't want that? Definitely all throughout high school, there were several moments where I would have people just come up to me, and they would ask me, "Oh my gosh, are you TJ's brother? Wow, I've seen you on your mom's Facebook page. You must be Sara's son." Stuff like that. It wasn't a big impact, but it was little nips that I would receive. It hurt a little bit at the time because I felt like I was just TJ's brother. I wasn't Connor. I wasn't my own person. I was TJ his brother, and it definitely hurt at the time.
Sara Clime 9:30
I remember you coming home one time in high school, and you said I just miss my name. I remember that so much. I knew I was gonna cry. I remember that so much because I remember thinking all this advocating that I'm doing all this for your brother how is it hurting you? That was a really hard thing too. Thank you for sharing that. You just said it was those little nips. I heard an analogy one time that whether or not you have death by shark or death by minnows, where they little by little take it away, it's still death. There's just a saying of death by minnows, and that's sometimes where no matter how much we try to protect you, or normalize life, there's just no normal to it. There's not. Now that you're older and you look back, do you feel like there are things that could have helped in that regard, like things that we could have done short of me not having the Facebook page?
Connor Clime 10:50
I mean, there's not really anything that you could have done. Looking back on it now, I kind of feel silly set talking about this.
Sara Clime 10:59
It's not silly at all.
Connor Clime 11:04
I don't think there's anything that you could have done, because that's how people get associated with it. I look back on it, and I'm so happy that they knew me, because of TJ. Because they're hearing about him and hearing about a disease that maybe not everybody's very comfortable with or very knowledgeable of. To know that they've gained some of that knowledge helps me to cope with that.
Sara Clime 11:34
Maybe, and I don't want to put words in your mouth, but maybe with maturity comes more understanding of the situation.
Connor Clime 11:41
I would say that's a very good way of putting it.
Sara Clime 11:47
We've kind of touched on this, but sometimes you felt alone. Did you feel alone that you were ignored, or was it more people don't understand? Can you elaborate on alone? Was it more of a physical feeling of being alone, or was it emotional or both?
Connor Clime 12:10
I feel like it was a little bit of both. Whenever you would go off to Baltimore, and I would have a soccer game, and it was an important soccer game. There's nothing you could have done. I still would have liked to have my mother and my brother there. So, that would be the physical. The emotional definitely is just, it was more of...I guess, alone is not the right word to use. It was more invisible, and it wasn't me as a person. It was just the situation. It felt like I was being pushed to the background, and I wasn't. But that's what it felt like at the time.
Sara Clime 12:59
Sure. I remember the last soccer game you ever played districts, and it was you guys have gone farther than they had in several years. I remember being in Baltimore and the poor guy who delivered our food because we stayed in the hotel that evening because your dad was going to stream the game, so I could watch it live. I couldn't. It was just a big blurry mess from my point of view, but at least I knew I was watching something. I couldn't even tell where you were. I could tell the general vicinity just because I knew what position you played. I got pictures later. Do you remember that they put his phone on a tripod, and then they draped my senior mother's shirt over it and everything? I remember from the mom's standpoint, in Baltimore, the poor guy who delivered our room service. He walked out. I just was bawling because I knew I was missing it. We still were making a memory in a weird way, but I remember thinking I can't ever get this time back. You had said that sometimes you just felt invisible. Did you feel and I think it's more important that we focus on? I think those feelings are going to come when you are a sibling of a child with disabilities, special needs, or is medically fragile or anything like that. I think those are normal feelings. Did you feel that you were allowed, that it was okay to have those feelings, or were you afraid? Well, I don't want to upset mom and dad. Do you remember having any emotions about the emotions or was it just that's how you felt?
Connor Clime 14:46
I don't really remember having emotions about the emotions.
Sara Clime 14:51
That might be a boy thing.
Connor Clime 14:52
I think it probably was. I think there was one time when I was a little frightened not because you would be upset with me, but more, you'd be upset with yourself. I didn't want that to happen. I just kind of said, "You know what, it's fine. I can get through this. I've had to deal with this whole my life, what's one more instance?"
Sara Clime 15:20
Do you remember what it was about?
Connor Clime 15:22
I don't even remember. I just remembered that was a feeling that I had.
Sara Clime 15:25
Good. Okay. I think that those are valid feelings. I know your dad, and I've always tried to be honest with you, and then to make sure you knew that whatever feelings you had were valid. It's okay to not like your brother. It's okay to not like the fact that he has Duchenne. I remember when we were in Washington, DC. I don't know if you remember this, because I think we were about 14, at the time. You wanted to rent bikes. Up until that point, we had been pretty much an active family where we would go and we would do that we were on vacation, we would do things like that. I remember saying, well, we can't do that because your brother can't ride a bike. We don't have any adaptive equipment. You were very disappointed. I remember telling myself, let him be disappointed. Let him be disappointed. Let him be disappointed. Do you remember instances like that?
Connor Clime 16:25
No, not really. Okay.
Sara Clime 16:27
I think that that's important for all the mamas out here listening right now is that I think sometimes that we internalize a lot of this, and it is more devastating to us than it is to them. But again, hopefully, we made you feel safe in expressing whatever emotions you had. Again, I think it's different for boys and girls. Were there certain ways that you can remember that you felt that we made you special, or things that maybe we did that made you feel that you weren't special, either way, good or bad?
Connor Clime 17:10
I think two moments really come to mind when I think about this. The first one was getting to throw the first pitch at the baseball game, which was given as a gift to TJ. You decided, no, I want both my boys to be out there, so I got to go and experience that with TJ. Now I didn't get to throw a ball, but getting out to that pitcher's mound at the Cardinals stadium was so cool. I was so excited because I got to experience it with TJ that I didn't even care who was throwing the ball. It was just, I'm here. I felt special. I felt like I wasn't just TJ's brother. I was me, and I was having fun. The other big-time was TJ's Make-A-Wish trip to Hawaii. You and dad had made it very clear that this was TJ's trip, and we're going to enjoy all of it together. You guys made sure I could have like a day or two where I got to go and do what I wanted to do. There was a day when we got to go surfing. We got to go to North Shore, and those were by far my favorite days. I remember feeling so happy that I didn't even remember why we were there. It was just like a normal vacation. It wasn't this special trip because my brother has Duchennes. It was a family trip that we got to enjoy together. So those would be those are the two biggest moments I can think of.
Sara Clime 19:00
A little funny story about the Make-A-Wish trip. We did go in the first five days. I mean, it was like an unreal trip. We were catered to. It was unreal. We had a penthouse suite, The Sheraton Waikiki Beach. I mean, it was ridiculous. It was so ridiculous. We decided, we're just going to add on another four days, three nights to the trip, and it's going to be Connor's time. We're going to just do things that Connor would like to do. We had to move out of the suite. Do you remember that? So we had to move out of this suite. We go from this suite where we literally had a view of three sides of the hotel. I mean, it was ridiculous, to basically what we could afford, which was the partial ocean view, with the air conditioner. I remember walking into that room and you were like, "Well, this is different." I remember thinking, you have no idea, but it's so good to hear that. I think it's funny as parents, we're trying to make it so memorable, or just make you feel special in certain ways. One of the things and I don't even know if you would consider this as something that was intentionally done to make you feel special, I almost hesitate to bring it up. We did a lot of date nights, or date days, we did a lot of that. I made sure that we had them no matter what. If I was in Baltimore, within a week, you and I would do something. Even if it was just going to the grocery store and getting an ice cream cone for you afterward or something like that. You got to go to the grocery store, and you were the one who got to pick out all the cereal, all the fun stuff, all the snacks. That was your thing. Do you remember normal day-to-day things that maybe your dad or I would implement that you can now as an adult look back and think, yeah, that helped?
Connor Clime 21:10
I would say definitely those date nights. They definitely did. I do remember getting to go on a couple with dad, but he's not a big date guy. I would say stuff that he would even do would be, "Hey, Connor, why don't we go kick a ball around? Why don't we go biking? Why don't we go do this and go do something active? It was our way of getting together and hanging out. With you it was going on date nights to Love Sushi or going to the grocery store, just getting an ice cream cone. It was that special one-on-one time that helped me get through some of those negative feelings towards it if I had any at all.
Sara Clime 22:01
Yeah, I think that that's I think that's important too. Coming from somebody with TJ has physical disabilities. Again, it just wasn't like he was diagnosed. And then all of a sudden, he had these physical disabilities. It's been a progression. It's been a transformation. We're still going through it. I remember at the beginning of it thinking if TJ can't do it, none of us are doing it. If TJ can't ride a bike, I don't ever want to ride a bike again. If TJ can't climb stairs, I never want to climb another stair again. I know that sounds ridiculous, but I remember having those thoughts. It was just something that I thought no, that's okay, it's okay that TJ is left behind, that you and I do something. It's okay that you guys go and do something physical. I know a lot of this, it might seem like common sense, but I think sometimes we internalize those things as parents, and we don't even realize it. I would just encourage you, if you're listening, to really reflect upon what you do or don't do with your family and to see if any of it is dictated by the diagnosis. Granted, some things won't change. Some things you just can't do because of that diagnosis, but that doesn't mean that some of the family can't go do it, some of the family can't still experience it. I was very fortunate very early on for me to feel convicted of the fact that we all didn't have to go without everything because TJ has to go without everything. I think it's important too; TJ would not want you to go without it. TJ would not want you to not play soccer. He would not want you to not be athletic. I think that's important to remember as well. What has been the best thing about having a brother with special needs, if anything? He's still a brother. YOu guys are still brothers, and he's 17, so he's kind of in that age where he's not always likable.
Connor Clime 24:05
I think if anything, it has helped me to be more caring and more loving towards those who are considered different because I have to live with someone who is considered different. You brought me up to where I need to love everybody because everybody deserves the same kind of love. We're all loved by the same God. I think it helped me to realize that just because they have some weird title of a disease that I can't even pronounce, that doesn't mean they're terrible human beings when they're annoying. o It helped me to go and reach out to those and to hang out with them. I've made friends who have those kinds of diseases, and it might not all be physical, it's mental as well.
Sara Clime 25:08
I agree, I think you are so much more empathetic. I think a lot of that stems from having to take into consideration someone else. I would completely agree with that. I think all the worrying that I did for you growing up, you're just a phenomenal young man. I think your dad and I can't take credit for that. I think that you have persevered through a lot of this. I think that your dad and I probably didn't give you enough credit growing up, we were trying so hard to make sure everything was so normal, or as normal as it could be that we didn't realize that you were taking the difference and turning it into your own and making the most out of it. You brought home friends. You would say, I want to invite "so and so" to my birthday party, and I'm like, I don't even know who that is. It would be somebody with some behavioral or some mental disabilities. We were always just so proud of the fact that you would do that because you just realized that they didn't have friends, and you wanted to make sure that they had friends. I think that that comes with this life, so there are definitely some benefits to it. What was one of the hardest things growing up?
Connor Clime 26:35
I would say how you have to explain everything to people because it's not just like, oh, yeah, my brother's got Duchennes, and everyone knows. There would just be some instances where it was like, oh, yeah, I've got to watch my little brother when somebody is asking me to hang out, and they'd say, "Oh, well, he's, what, like 15 or 16 now. You can just leave him on his own." I'd have to be like, no, I can't, because he has this, he has to have somebody there, and I'm the only person there to be with them. It sucks because it was like I had to turn down some friends instead of going and hanging out with them. If I really wanted to go do this one thing, and I was with TJ, and he couldn't really do that, because I didn't really want to make him feel left out. I still had to be there with him.
Sara Clime 27:38
Yeah. As much as we tried growing up, not having you have to give up too much. I think too, this is another important part for parents, is to realize, like, for us, I had to watch my little sister all the time, all the time. Not all the time, but I watched her quite a bit. I remember having to turn down stuff, and neither one of us had special needs or disabilities. I remember thinking growing up, I had to watch my sister all the time he can watch his brother occasionally. I know that you had a little bit more to deal with than I did. Connor, thank you so much for being here today. I really appreciate it. It's just really nice to hear, I know I'm pretty partial, that as an adult, this didn't break you. It's not a make-or-break situation. It's the fact that you deal with it, and you move on and you make the best of a situation. It's not something that completely destroyed your life. It's not anything that you look back on and think, well growing up just stunk because of this. There were certain aspects of it. Sure. Is it fair to say that it's not a positive or negative situation, it was just life?
Connor Clime 29:12
It's just life. I mean, sometimes we just have to deal with the hand we've gotten dealt. I would like to say I think a lot of this and a lot of the reason why I was able to go through with it was because of the faith foundation that you and dad put on me. I think without that, it would have been a lot harder, and there would have been a lot more negative emotions. So that helped put in perspective, that not everything has to be negative. There's always a good thing. God's always got a plan. We might not see it, but it's there and he's working through every single one of us whether we have a disability or not.
Sara Clime 29:58
Amen, amen. So I'll tell you, the night we told you and your brother about his diagnosis that we knew that something was wrong with his muscles. That's how we put it to you. It was New Year's Eve, and we were gonna watch a movie. We set you guys down. That's why I asked you at the very beginning what you remember about the diagnosis because I wanted to see if you remembered this story. He was sitting on the coffee table, and your dad and I were sitting on the couch, and TJ says, "Alright, I don't know why we're talking about this." He didn't really you know, and you were always very intuitive. Your dad and I said even before the diagnosis, you are an old soul, you have been like that since you were a baby, just wiser beyond your years. I remember you looked at TJ, you were sitting right next to him on the coffee table, and you looked over at him and you put your arm around him and you said, "Well, it's okay, God's got a plan, TJ, God's got a plan." I remember your dad and I were like, who raised this kid. I know that you said you were able to deal with that, because of the foundation of faith that your dad and I gave you, but you gave us a foundation as well. I think that's an important family trait, so thank you for that. I made it through that without crying. I'm just going to close us out in prayer right now. Thank you guys for listening in today. Connor, thanks again for being here.
Connor Clime 31:26
Thank you for having me.
Sara Clime 31:28
Father God, thank you for our children. We thank you for the siblings that step in and step up to this extraordinary life and just to be that extraordinary strength, friends and role models to their siblings. We know that the life they lead is rewarding, and they love their brothers and sisters, but we also know that this journey can be lonely. It can be isolating and fearful and even guilt-ridden at times. We ask that your truths, your love, your determination, patience, that all of these plans are revealed to them or just the fact that you are in control and that you are protecting and encouraging them. We ask for their continued love and patience and determination and their perseverance through all the trials to override anything that this life throws at them. May we as parents continue to be here for all of our children far into adulthood, and you show us the way for that. We ask all of these things in your precious son's name, amen.
Sara Clime 32:49
Thank you for joining us this week on Take Heart. Our prayer each week is for your heart to be encouraged. We are grateful you are walking on this journey with us. Thanks for listening. Next week, Carrie, Amy, and I will all be together to wrap up this month on siblings.