Episode Transcript
[00:00:00] Foreign.
[00:00:06] It's Lacey, and we're here for another episode of the Llamas podcast.
[00:00:11] Unfortunately, we're having to do another solo episode, as I've mentioned before, and y' all probably heard, if you listen, every week, Lauren had a pipe burst in her office, so she had to relocate and move offices. And then now she's just trying to get reestablished and get her clean client meetings rescheduled and get caught up on work.
[00:00:33] And I know it's a lot on her plate because I personally had three matters for her.
[00:00:37] Just, I think end of last week I sent or this week.
[00:00:41] So, yeah, so I know that she's trying to get caught up on everything, because like I've said before, I am one of her clients, too.
[00:00:49] While I am an attorney, I do criminal defense, so I don't do any kind of estate planning, wills, probate, anything like that. So I always go to Lauren for all of those situations, and my family does, too.
[00:01:04] So my mom needed something with some property, and a friend of ours needed some help with a will that she's helped before.
[00:01:13] So I know that she's really working on trying to get caught up with all our clients, myself and my. My people that I recommend her to as well. So, unfortunately, she can't be with us.
[00:01:26] I know one of my favorite podcasts used to be Baby Mamas. No drama. And they had a series of solo episodes, and it was because they weren't friends anymore and the podcast was ending. I can promise you that's not happening. I talked to Lauren today about my topic today and talked about what I should do and what I should discuss.
[00:01:45] And like I said, I know she sent me my updated will just this week.
[00:01:51] My husband and I are taking a trip into this month, and we're taking a really big trip in June. So that's why it was important for me to go ahead and update my will. I know this is going to sound terrible as a lawyer, but my youngest son is four and a half years old, and he was never put into my will, so that was something I wanted to update.
[00:02:13] And just family dynamics, friend dynamics, they change over the years and stuff like that. So there's a couple other things that I wanted to update and change with my kids if anything happened to us.
[00:02:25] And sometimes that just needs to happen. And I went from one kid to two, and so, yeah, so had to get everything updated, and Lauren was working on that for me. And this is my reminder to all of you that if you don't have those things in place, would definitely Encourage you to get that done. And definitely, if you're in South Carolina, I would recommend Lauren, especially if you do have a special needs child, because she helps with a special needs trust and can kind of walk you through those things as well and the differences and all of that information.
[00:03:01] With that being said, transitioning to my topic today, it is February.
[00:03:08] Happy February. Happy Heart month.
[00:03:11] February is heart month. And that is a month that is very near and dear to my heart and my family's heart because of Luke, my oldest son in his heart.
[00:03:23] Luke was born with a congenital heart defect.
[00:03:28] We found out when I was pregnant with him.
[00:03:33] And so my topic today is going to be just about mom stuff and things that I face with Luke and differences and stuff. I know we do a lot of legal topics and stuff like that, and I love that. And this is my kitchen, if you're watching on YouTube.
[00:03:47] But we do it is the Llamas podcast for a reason. It's mama life too. And so I kind of want to talk about some of the things that I've been going through with Luke, things I've gone through in the past with it being heart month and kick off February that way.
[00:04:05] So I found out that Luke had a congenital heart defect at my anatomy scan when I was 20 weeks pregnant.
[00:04:13] I remember vividly going to turn left into the medical center where I was about to have my anatomy scan and I had a pit in my stomach.
[00:04:25] I knew something was off.
[00:04:29] I have really good intuition a lot of times. If y' all have heard the podcast, you've heard some of the crazy things that have happened. So that's one thing that happened. And then that's when the doctor told us that, you know, that Luke did look like he had a hole in his heart. And we were being sent to a high risk doctor. At the time, we did not know he had down syndrome. In fact, we did a screening, if you've heard my story before, and it came back negative for down syndrome. But the heart defect did lead us to finding out he did in fact have it.
[00:05:00] So there's different testing, there's screenings and there's diagnostic testing. Once we learned that the heart defect at the high risk Dr. Luke had an AV canal defect, which is really common with babies with down syndrome. So once we got that firm diagnosis with the high risk doctor knew what heart condition we were dealing with, that is what led us to do further testing and do an actual diagnostic test. And that led us to finding out that Luke had Down syndrome. While I was still pregnant.
[00:05:31] I'm very grateful that I found out everything before he was born.
[00:05:37] Once we found out about his heart diagnosis, we were able to solidify a plan. We had a cardiologist, and so I would see the cardiologist even pregnant, because they would make sure that nothing was changing.
[00:05:51] We were fortunate in the fact that the defect he had did not require me to deliver. In Charleston, sometimes that does happen.
[00:06:02] MUSC in Charleston is one of the best hospitals in our state. And if there is a prenatal diagnosis of a heart defect that requires surgery right after birth, a lot of physicians will arrange it so that women birth there so that way the babies can go straight into care.
[00:06:21] Otherwise they are airlifted there, which is very scary. And I actually know of two women that had to go through that.
[00:06:30] My suite mate in college and my. My first boss that I had in high school. His daughter. I shared with her and knew her from high school and her son was the same way. And so I'm very grateful that, yes, it was very hard to have the heart defect, but it was not one that required immediate surgery. There were things that they would just be checking for monthly until it was time for surgery. So they let us know that the surgery was typically between 4 and 6 months old.
[00:07:03] Luke actually did require surgery at the 4 month mark instead of the 6 month mark. They wanted to try to get him to £10. And there were just other things going on that they recommended us go ahead and do it at four months. So we had surgery or he had surgery at four months old and he did great. Like I still look back and I mean, he just was, was so strong. I mean, we were in the hospital less than a week. The doctors and providers were phenomenal.
[00:07:35] They were just great. The nurses, oh my gosh, they were just so nice and caring and I definitely owe it to them. We had some pain management issues once we got home and the cardiologist got us in right away and we were able to get right back to what we needed to do to help Luke and he is just thriving. So if you're listening to this episode on February 6th is actually heart Day. And you will see me and family, friends, staff wearing red.
[00:08:06] It is wear red day for anything with, with a heart. Heart defects, congenital heart defects.
[00:08:14] There's so many diagnosis, so it's not just congenital heart defects, but that's what we will be wearing red for, is congenital heart defects and for Luke.
[00:08:25] And I'm just so, so grateful for medical advancements. And that's kind of why we wear red one for awareness too. Because I believe the two women that, you know, found out at birth would have loved to have known prior to and not have had such traumatic experiences. There's. I've actually been told that heart defects are really hard to see at the 20 week anatomy scan. It's actually better to look at them after 22 weeks, but unfortunately we're not doing that. So it's kind of frustrating with our healthcare system that there's data out there that says when these things can be diagnosed and should be looked at. And we're not following it because it puts women in families in very traumatic situations and babies at risk of losing their life if we're not following best practice. So that's another thing we wear red for is to highlight the risks of congenital heart defect. And if I, when I had my second pregnancy, they were very cautious because of Luke. So I did have a echocardiogram where they looked at my baby's heart past 22 weeks because that's when it is the.
[00:09:37] You can see the heart the best past that because the baby's a little bit bigger. And we were able to confirm that Mac did not have a congenital heart defect like his older brother.
[00:09:47] If I were a woman pregnant and going through everything all over again, I would absolutely demand an anatomy scan or an ultrasound looking at the heart past 22 weeks in Echo. Just anything to double check that just to see because I, I just think when they miss those things, it's because you can't. It's really hard to see on the anatomy scan. And I feel very lucky that our ultrasound tech did find it and was able to let the doctor known us be sent to high risk. So we were able to find out, oh, that all those things.
[00:10:23] So that's kind of Luke's heart surgery. Another thing I wanted to talk about with Luke is it's his birthday month.
[00:10:30] He was born February 18th.
[00:10:32] So we are just celebrating him all month. And for his birthday we are going to Myrtle Beach. We typically take a birthday trip for him. It's usually President's Day weekend. We usually do not do a birthday party. And I kind of wanted to talk about that because I've really made some realizations in the past week of why I, I do this. So Luke has had two birthday parties. He's about to be eight, but he's only had two birthday parties.
[00:11:01] One of the reasons is once he got old enough to talk, I would ask him, I asked him this year, do you want a birthday party or do you want to go to a hotel? And he picked a hotel. Luke loves traveling, going to different places. My youngest son does, too. That was such a big part of my childhood with my grandparents was traveling. So I think they definitely get it from me and my husband's the same way. We will spend all our money going places. We just love seeing the world and seeing different things.
[00:11:30] So.
[00:11:32] So, yeah, so they. They got the travel bug. Honest.
[00:11:35] And then I know my mom said last year and again this year, are you ever gonna have a birthday party for Luke again?
[00:11:42] And I was like, I don't. I don't know. I guess if he chooses it. But when I think of a birthday party for Luke, it is very different from typical kids. So Luke does not like birthday presents or Christmas presents or presents at all. Like, it's not that he doesn't like the gift or that he won't use it.
[00:12:05] It's very odd.
[00:12:08] It. It's hard to get him to open something. I think originally it was because of the fine motor skills. To open a present was very difficult for him. So he just really didn't care to because it was difficult to even open a gift. And then once we got to where he can open a gift now, he'll look at it and just then just do it. Like a face palm, like.
[00:12:28] And it's not that he doesn't like it or he didn't want it or he won't play with it, but Luke really isn't a kid that is super into toys.
[00:12:38] He very much loves hard play. Like, the thing he does, the. The. What he plays with the most at home is a ball. He literally will throw a ball up and down the steps over and over and over again. Or he'll kick it and do soccer.
[00:12:52] He loves going outside and playing basketball.
[00:12:55] He loves baseball. So he's not really a kid that's gonna sit down much and play with, like, action figures. Or sometimes he'll play. We have, like, this indoor jungle gym. Sometimes he'll play on it. Not a lot. He would prefer just to be by himself throwing a ball or shooting a ball into a hoop.
[00:13:15] So it's kind of hard to tell people, like, hey, come to our birthday party. These are the. This is what he's into. Spider man, creature cases, whatever. I'm thinking of things Max into. But, you know, for Mac is significantly different. Like, he really loves Spider man right now. He's really gotten into Star Wars.
[00:13:36] Mac loves dinosaurs Right now. He's gotten into those. He wants a T. Rex. So for Mac, it's really easy for me to say oh, these are his interests right now. For Luke, it's very, vastly different. I could not, I mean, honestly, just get him another bouncy ball, because that's what he loves to play with the most, is a bouncy ball and just kicking it up and down the stairs. He'll do that for literally hours. Or if you sit and throw a ball with him or have a bat, he would do that for hours.
[00:14:05] That is his go to. And there's only so many bouncy balls we can have in the house. So that's one of the reasons. And I was actually talking to my law partner. She has a nephew with special needs, and something came up about how he vocalized not liking opening gifts in front of everybody and his feelings on that. And they're like, we won't do that. And it really made me think about Luke. I just. I think Luke feels that same way her nephew does. He just can't vocalize it like he does because of his speech delay at this point. And so when she said that, just kind of a light bulb went off, and I was like, oh, my God, that makes so much more sense. And now I'm kind of reflecting back on holidays and how he acts with opening gifts and stuff. And sometimes I worry because it hurts other people's feelings. Like, our parents will be so.
[00:14:55] Our moms will get so excited about a gift for Luke. And then he opens it and shows, like, no interest. And sometimes he'll. It appears like he's so disinterested in it. He actually is right here.
[00:15:09] Baby doll. So he is obsessed with our friend's baby. His name is Miles. The baby is. And Luke loves baby Miles. He will pet his head. He likes to help feed. His Bo Bottle is the sweetest thing.
[00:15:23] So he kept petting his brother's head. I said, why don't we get you a baby doll? So he picked this out online. I ordered it, if you're listening. It's a little baby doll in, like, a little blue onesie.
[00:15:36] I got it in the mail, and I opened it literally just this week. It was like, look what came in. And he said, and literally would not pick it up or touch it, and left the room.
[00:15:51] And I was like, you picked this out? Like, we scrolled together. And that was the doll he wanted. And so by that afternoon, he was carrying it around, petting its head, calling it Baby Miles.
[00:16:05] Ever since he got the doll, he sleeps so that every night. He's very particular on where he sleeps in the bed. He has the baby doll, has to have his blankets put a certain way.
[00:16:16] And this morning, he actually ran upstairs before school because he had to go get baby Miles, and baby Miles needed to come downstairs. And he carries him just like a little baby. So, like, while opening the baby itself, it almost, like, stressed him out. He still loves the toy. So just reflecting on. On that and what my law partner said, I definitely just don't think that that's something that Luke finds joy in. So if I ever have a birthday party again, I've decided I'm not going to make him open presents.
[00:16:49] I'll either say, no presents, or if you would like to bring a gift, you can put it on the table. But we're gonna open it and let him come to it as he wants, because it's just not something that brings him joy. And he should have all the joy on his birthday and do all the things that he loves. And so that's one thing I've come to the realization of and actually told my mom. I'm not going to make him do Christmas presents anymore either. When the kids open presents at Christmas time, if he wants to, he can, but I'm not going to sit down and make him open his presents anymore. Like, just hearing my law partner talk about her nephew just kind of made me realize what his feelings are, and I think it's important to recognize that. So I'm just really grateful that that conversation came to fruition because it helped me kind of understand maybe the, like, anxiousness that Luke's going through when opening gifts. And it is so significantly different from other kids. It's significantly from my other son. But I want to respect his space and where he's at. And if that's not, like I said, something makes him happy with the birthday party in general, when I think about it, it also just.
[00:18:00] I don't know how much it makes Luke happy, because Luke is one that his best friends are adults. If you got. I can tell you, Luke's best friends, his top two friends are going to be Katie and Corey.
[00:18:14] He also loves Ian, who's at the beach, but his best friend. And all those are adults, grown adults. Like, we're talking late 30s, 40s. Those are his best friends. And at a birthday party, you know, when you think about it, all the kids are playing together. The adults are socializing.
[00:18:31] Like, if a kid plays with Luke, they're intentionally going to play with him. Like, my nieces will go. I'm like, oh, I'm gonna go play with Luke for a minute. But that typically means you're sitting with him while he plays by himself, like he's doing something on his own, and you're just kind of present with him.
[00:18:47] He is not a kid that interacts a ton with other kids. He will with his brother when they're here. They would do things together, like seesaw and build with the Magna tiles. They love to do that together.
[00:19:02] And they'll go outside and do certain things together. But a lot of times, Mac doesn't want to do what Luke does outside. So they are separated even then.
[00:19:09] But Max, probably one of the few kids like that he will sit down and actually play interact together.
[00:19:16] Otherwise, it's just kind of another kid sitting with Luke while Luke plays by himself. And that's what Luke likes. Like, there's nothing wrong with him. He's happy, he's joyful. We went to a birthday party. He was at the jump park.
[00:19:31] He just kind of did his own thing. I don't think Mac ever interacted with them. Mac was off playing with his friends. And I also know at a birthday party, that's what's gonna happen again. Luke is gonna be playing by himself, which, like I said, it's fine.
[00:19:44] And all the other kids aren't going to be doing their own thing. But is that the thing that makes him celebrate the most and bring the most joy, like you would think a birthday party is? It just doesn't. But what I can tell you is Luke loves a hotel. He thinks it's the coolest thing. He loves the beach. He loves the ocean. He loves water.
[00:20:06] He loves Ian.
[00:20:08] He loves Katie and their family. So a lot of times we do something together with them. President's Weekend, because it's their daughter's birthday. He loves going places and restaurants as long as they have hot dogs. And so for us, it just makes more sense to do something special. And while a birthday party and presents are often special for some kids, it's just not for Luke. Like, what is special and joyful and different for him is going to be more of a travel experience than a birthday experience.
[00:20:40] So I plan on in the future really being more observant of how he is with opening presents. And instead of trying to, like, make it happen, let him lead the weight on what he does. Because presents are supposed to be a fun, joyful experience. And if it's not for him, I'm done forcing it. And my mom, when I was talking to her about it, she said. I said, do you not find it odd? She goes, not really. I said, mommy, we have four other kids in our Family, none of them are like that. And she said, well, I guess honestly I think back to my aunt. So my mom's aunt, my great aunt Jenny, she has an intellectual disability.
[00:21:22] And my mom said a lot of the things Luke does just kind of reminds her of Aunt Jenn and some similarities there. So she's just never really paid it much attention. So that was a good conversation to have. And so we are going to move forward and letting him just do things that he wants to do for his birthday. He loves fire and candles, so we'll make sure that there's a birthday cake with fire and candles. We don't care if he eats the cake because that's hit or miss. We'll make sure he has candles to blow out until he tells us he wants a party. We are going to travel and make that his birthday party slash present experience.
[00:22:03] And if anybody ever wanted to send a gift of some sort, he would just open it on his own accord and we will just let him kind of lead us in what brings him the most fun on his special day. So I learned a lot this week and just other kids experiences. And so I thought it would be important for me to share mine in case there's other moms, dads, family members out there who are experiencing, you know, similarities with a child and because it's nice to know that you're not alone. And like I said, just hearing other people's experiences lets me know how I need to move forward and I shouldn't be trying to push this and make it something that it's just not for him. And that was a good realization for me. So that is a little update on my little squishy and that's what I call Luke. I have since he was a baby. And if like I said, you're hearing this, Happy heart day.
[00:23:01] The 18th is his birthday. So like I said, we'll be just celebrating him and all the joy that he brings us all month.
[00:23:10] If you have any questions about Luke or there's something that like is similar and you heard my experience, I want to share your own. I would love to hear from other people.
[00:23:20] So yeah, definitely send us a message if you have any questions or anything like that. I don't know if we'll be together next week.
[00:23:26] Lauren has some other stuff going on. So just stay tuned and one of us or both of us will see you next Friday. So thanks for listening. Have a great day.
