Grace Raising Nella

In this episode, we talked to Grace Grutter about raising her daughter Nella, who has SMA.

To find out more about Grace, follow her on Instagram @bowennellaandco 

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Transcript

Deonna: [00:00:00] hey y'all. Welcome back to Raising Disabled. So today we're talking to Grace and Grace. I think I started following you, I don't even remember, but it was early on in, Allie getting hurt and everything. And I was just following every single mom that I saw, just like throwing spaghetti at the wall and hoping that I was gonna figure out what to do, from this whole thing.

And I was following so many moms initially, and I. I don't follow all of them anymore because a lot of 'em, it was just too much for me. It was too dark and too just, I don't know, like all the sadness and none of the fun. None of the good, none of the , good times. And I saw some video of you picking up one of your kids from the bus stop in a unicorn outfit, like one of those blow up costumes. And I was like, what the heck?

But you do funny stuff like that all the time and [00:01:00] I just kept, following you and seeing how you guys celebrate things and you're just disabled daughter, we're gonna talk about some, but she's not your only kid. And I like how you celebrate all your other kids and you give 'em all equal. I don't know, like attention. And I think that's something a lot of us obviously can learn from and things, but you have the most dark, hilarious posts and sense of humor and you are just laughing at this crazy life that we have.

And there is a lot of funny things that happen to us or that are, going on. But I love that you love Hanson. I had a huge crush on Zach Hanson. He probably was like the first crush I ever had in my life. And we'll talk about that later if you want. Oh my gosh. Yeah. Hanson, I loved zach Hanson today. I pulled him up and was showing my nurse who's 25 and doesn't know who Hanson is . [00:02:00] And I was like showing her and educating her and my daughter about that. That's Funny's so funny, but you just have a lot of fun and stuff. And before we get started and you tell us about your family. I know you went to the ERAS tour and that was such a fun thing you got to go do,

but I wanna know as a little bit of an icebreaker, what your favorite song or moment was from that tour? 'Cause I would've killed to have gone to that would've been so much fun to go with Ali, but we didn't really become Swifties until later on in life, so we miss that whole experience. But What was your favorite thing? 

Grace: Yeah. Oh my gosh. I don't know if I can like. Take it down to one. It's so weird because it's I was there for three hours, three and a half, however long it was. And I was into it. Like I didn't take videos. Yeah. I barely took pictures, but it went by so fast. It's it's almost like there was like any amnesia, like yeah, I don't know if I [00:03:00] could narrow it down to one thing. It was just all, magical. And I was like, all in screaming every song, dancing, all of that. And so three and a half hours you think that's a long time. But it felt like it went by like that. Aw, that's funny. But it was so great. It was just, I even have goosebumps right now. It was just like this collective, female energy and where everybody was just free to like dance and sing. And look as silly as you want. And no one cared because they were doing the same thing.

Deonna: Yeah, I feel like so many people were videoing that show and I was like, I don't think I would video the show. You have two professionally videoed concert specials of the show, so yeah, just have fun while you're there and soak it in. So yeah Allie loves watching those concert things over and I mean, it's, it's fun, but I'm glad you got to go do that. And it, was it just you and your friends? 

Grace: Yes, it was me and my friend Lauren, who's from Kansas City. And as I moved to Michigan four years ago. [00:04:00] So she flew to Michigan and then we drove to Toronto together. And so that was really fun. I haven't been to Canada Oh my, since I was little. My gosh. And so yeah, it was fun. It was definitely a whole bonding experience. We were already so close, but to go to another country and kind of figuring it out together was, a lot of fun. 

Deonna: Yeah. That's neat. I'm glad you got to go do that. I know it's hard for us to sometimes get away and I think you're a good example of balancing some of that stuff and doing things you like and also being a good mom.

You can have it both ways. You can do both things. Yeah. And I feel it took me a while to realize that after everything that happened, but it's good to know that and see moms doing things for themselves, yes, absolutely. 

Rhandyl: Yeah, for sure. I totally agree. Whenever I go to concerts, I'm the same way. I'm like, I'm gonna put my phone away, and just soak up every moment because you're never gonna capture anything on [00:05:00] your phone or a video, like it's terrible video. Yeah.

Okay. Grace, I'm so excited to get into talking about your family. So you said you live in Michigan, where at in Michigan? Tell us a little bit about your family.

Grace: Oh, thanks. We're in Grand Rapids. We moved here four years ago. My husband is actually from Grand Rapids and he always wanted to move back. And a dental practice came up for sale in his hometown. And we were kind of like, well, it's now or never. And so now we live here and we've got my husband's parents in the backyard and one of his brothers and sister-in-laws on the other side. And then we've got another brother and sister-in-law and an aunt like we live on a family compound. So it ended up being something beautiful. My kids just run all around. We have family dinners. It's really great. Other than the cold. Yeah. 

Deonna: And where did you from? Kansas City? 

Grace: Yeah, we moved from Kansas City. So I am Kansas City, born and raised. I met my husband at a small university in [00:06:00] Iowa. And then he came to Kansas City to do dental school at UMKC and I came to Kansas City to do my last two years of college, which was nursing. We were both in Kansas City at that time, and then we just stayed there.

And so I'm a pediatric nurse and he's a dentist. And then together we have four kids. We've got Bowen, who is 14 and a half. Oh my gosh. And then Nella, who's 12 and a half, which is amazing. And then we have Corwin, who is eight and a half, and then we have Trixie. Who is three and a half. So it's chaos here all the time.

Deonna: Was it tough leaving Kansas City? 

Grace: Yes, it was really hard. I knew in my heart it was something that we needed to do and it would be the best decision for our family. But leaving my family and like my friends, like I have high school and childhood friends there, you know, and everything. And then also leaving another team, leaving a nurse at Nella, love leaving that whole hospital that knew Nella and knew us. That was [00:07:00] really big. That was really big. 

Rhandyl: That would be scary. 

Grace: Yeah. Switching DMEs, like the whole thing, like just. Oh yeah, a lot. Selling and buying a practice, selling and buying a house, like all of that was nothing compared to the moving Nella over and all of her care and her services. The Medicaid the therapy, like everything like that was, it was a lot, but I guess I'm here to say it can be done. 

Deonna: Yeah. We've had a friend move to Ohio and like listening to her go through switching all those companies and stuff, I was like, oh my gosh. Like I didn't even really think about the fact she was gonna have to do all that. And you do, most of these companies aren't national companies. They're so regional and stuff. Oh my gosh. Yeah. Even the act of just moving her like physically driving and stuff is probably not easy to do.

Grace: No, it was luckily one of her nurses made the drive with us. And so it [00:08:00] was a very long day, but we made it, and actually Nella did great.

Deonna: So tell us about her diagnosis. 

Grace: Yeah, sure. So Nella was born healthy, my pregnancy with her was really pretty normal. And even the day that she was born, she was holding her head up. She nursed great right off the bat. Like everything when she was born was normal. And then starting around six weeks, I noticed she wasn't pushing up as much during tummy time and when I'd put her in her car seat or in the little bathtub, like her legs weren't kicking as much.

So at her two month appointment, I brought it up to her pediatrician and I was like, I just have this feeling that something's not right. And he was like she's just a chubby baby, we'll just keep watching her. And I even had two friends who were pediatric. I know physical therapists look at her and both again, we're like, she's super chubby. She has reflux. , I think she's just gonna take a while. Like she's just a lazy, chubby baby.

But this whole time I'm like, [00:09:00] this is my second baby. I know something's wrong here. Pediatric rn. So I am about 11 weeks. I finally took her into her pediatrician and I was like. I was honestly going crazy in my head because I knew something was wrong. Mm-hmm. And I felt like everybody was like, she's fine. Yeah. And so I brought her into the, her pediatrician and I was like, I'm not leaving until, you agree with me that something's up. And he was like, oh, you're right. I agree with you. And so we got into the neurologist the next day, which is honestly shocking who gets into that specialist.

Deonna: Wow. That's not normal. Yeah, 

Grace: no. So we got in the next day and this neurologist came in and he was asking questions and he looked inside Nella's tongue, tongue and Nella had what is called tongue fasciculations, where it's like you look at their tongue and it is like moving all the time like this. It's crazy. And he turned to me and he was like, oh, she has Werdnig-Hoffman Syndrome. And I was like, okay, what is that? If you don't tell me, I'm gonna [00:10:00] Google . And he just looked at me and he said it's fatal. Sure. And I just fell to the floor. Like my husband wasn't even with me. I don't, oh my God. Came back. I don't know why. I think he might've been in denial, honestly. And then I was just like, I'll handle it, whatever it is, not thinking it would be that. Wow. And then one of the nurses came in. 

Rhandyl: And it's crazy that he just looked at her tongue and then automatically diagnosed her with us without running any, Yeah. Tests. Tests or MRIs or, I'm sure all that came later, but Yes. To tell you after the, just your first visit that, she has a fatal diagnosis. I can't imagine.

Grace: I know. And so I didn't know what it was in that moment. He just said Werdnig-Hoffmann, and, but he said it was fatal, so I'm. Wailing and whatever, and the nurse comes in as I'm like, bawling my eyes out, clutching my baby and hands me this handout and it said SMA type one. And in that moment I knew exactly what that was. And I just like, even now i've just felt like it's like your [00:11:00] soul just leaves your body, yeah.

And so I called my husband and he came up and later that day we had, I think it was called like an EMG, where they like stick these little needles in her legs. And that came back.

Deonna: Oh, I've had that done to myself. And it hurt. That's awful. 

Grace: Oh, I know. I nurse her like the whole time she was getting it done. Done. It's terrible. Yeah. And that came back inconclusive. And that was the same day. So the next day we actually met with another neurologist and he was like, okay, we can get a a blood draw to confirm it, but it'll take a while. And then he was also very much like put her on hospice. He said you have weeks, to months left with her. So put her on hospice. Dang. He, and he, I remember he said something like, I, I've seen my uncle who has ALS live with this and this is not what you want for your child. And which now I'm like, fiery. That is not for you to say. Yeah, exactly. You don't know me. Yeah.

But anyway, we we left with a prescription for hospice and I just remember [00:12:00] coming home and like I'm sitting on the couch nursing her and I'm like looking out at the sun and I am like so mad at the sun for even shining like how that's how like angry and just how my whole world was thrown upside down. Yeah. But the day she was diagnosed 11 weeks, that was actually the first day she giggled. So later on that day, she came for the first time, which was like, I don't know, it was just felt like you just can't give up, and at that time there were no medicine, no therapies, nothing, no cure, no treatment for SMA. And type one was typically I think it had a lifespan of two years, max was man that, dang those statistics at that time. And that was the number one genetic killer of infants and children at that time.

But we were very lucky that we started a prayer page for Nella because it was just easier to update everybody that way. And then of course people were like, oh, do you know this local family and do you know this local family? And so we were able to meet with [00:13:00] other local families who have the same diagnosis. And they were like, mm-hmm. 

You know, you don't have to do hospice. You can pursue BiPAP, you can pursue G-tube. , And so I think hearing that and Nella giggling that day, we were like, we can't give up on her. 

So she unfortunately lost her swallow about four months. And so at that time we did the G-tube and then we learned how to do BiPAP. So she did BiPAP until she was almost eight. And then suctioning, oh man and cough assist. And we just got thrown right into it. And even though I'm a pediatric rn, there was still so much of the , respiratory part of it that was all so new to me. I had patients on BiPAP, but I didn't do anything. RT did that all, I had patients 

Rhandyl: Yeah, you just call the RT. Yeah.

Grace: I didn't do anything. So that was all really new to us. 

Rhandyl: I'm sure. Goodness. Okay, so that was the beginning. So now she is, you said 12 and a half? 

Grace: Yeah, she's 12 and a half. And with [00:14:00] SMA they are cognitively not. That's amazing. So she is a very bright, very funny, very sarcastic, typical 12 and a half year old. She doesn't speak, but she uses an eye gaze and I don't know if your girls speak, but like I know her noises as a sixth sense. You know what I mean? And I know her limited facial expression. While she might not speak and she might not have her eye gaze right there, she's very communicative. And like in school she says Uhhuh and she blinks and gives her teachers like she's sailing through sixth grade. She has a trach now, which is great. Yeah. But we still have, allie has a trach, where you have plugs and your whole, everything goes changed. So 

Rhandyl: yeah. My daughter has a trach too. Oh two. Okay. So all three of our girls have trachs.

Deonna: Oh, and in the winter, oh my gosh. 

Rhandyl: Yeah, she's, yeah. We just recently went through a full on months worth of plugs, like every couple of days. It was terrible. We finally, oh my God. Got a good respiratory regimen going [00:15:00] on. Yeah.

So how old was she when she got her trach? 

Grace: So she was eight. She actually got it the day before her eighth birthday, and I think it was 2021. So it was still like the hospital was quiet from COVID and all of that. But we actually did it just a few months before we moved to Michigan and we did it preventatively. She wasn't. And distress by any means. But we were like, you know what? She's got siblings, she's gonna get sick. We need this way to clear her airway. Yeah. There were lots of because now they're living longer that are starting to have seizures. And so we were like, we just want that airway. And she did great for the surgery. Yeah. For the first I wanna say, 10 days. She was so mad. And her heart rate was elevated. Oh, she was so mad. So I feel like that whole 10 days we were like, what did we do? Was this the wrong decision? 

And I think a lot of it was she had a lot of anxiety and actually a follower on Instagram reached out to me and she [00:16:00] said. I have a patient who has type one. She had something similar. What we ended up doing was giving her a few days of an anti-anxiety medicine in the hospital, and then she was able to calm down and start accepting it. So I mentioned that to the team to Nella, and I think she got two nights of, I wanna say like a Valium or something. And after that she was fine. Yeah. Oh, wow. I think she just needed to process it and calm down.

Rhandyl: Reset. 

Grace: Yeah. Yeah. But as you guys know, if your kids can't necessarily tell you what's wrong and it just, kills you as a parent, when you can't figure out what it is that's wrong. We had our arms act great, we had our leg. What if her arm got hurt with a blood pressure? We, I don't know. We did all these things.

Rhandyl: Yeah, it is the worst. My daughter she's nonverbal. She does use an AAC communication device. And she's starting to verbalize more and more, but just like you said, with Nella, you can tell by her noises and her facial expressions [00:17:00] and her body language, what she's trying to tell you. But there's sometimes when she's so upset and we don't know what's wrong, it's so hard hard and there's a lot of guilt that goes along with that.

Okay, so, let's switch to some positive notes. I would love to know what Nella's interests are her favorite things and what brings her joy.

Grace: Yeah. So Nella, oh my gosh. She is, funny and she's a little bit sarcastic. Like in class sometimes she'll have the screen pulled up and then she'll try to pull up Netflix. I'll like, no but she's just she does that sort of stuff and she's so funny. In the mornings when I sing, I'm so annoyed in the mornings with her, hour long treatment and I'm singing and her face. Yes. And I love you and I and kissing her. And she's just and I'm like, am I being annoying? And she's like, haha. She's just so funny. And so I feel like typical 12-year-old tween,

but she's girly. She is her room. She wanted it pink. She loves nail polish. She did a report in school about how she loves having her nails done, which [00:18:00] we make sure hers are always done. Mine, however, haven't had a manicure and I don't know how long, but she's really good with her siblings. It's just anything girly like princesses. Not so much princesses anymore, but she was like super into princesses and like now she's watching a lot of the tween Disney shows and she likes going out and about, she likes going shopping,

Deonna: yeah. I love her. Her hair is amazing. Randall, you've got to look at this girl's hair , it's perfection. I'm like, I need her shampoo conditioning regimen because oh my gosh. It's like perfect 

Grace: and it's so thick and I have the thinnest, finest hair in this girl. I'm like, how did you come from me? I don't get it. 

Deonna: That's how I am too. Allie has really thick hair and mine's like falling out I feel like 24 7. I'm like okay. Doesn't make sense. Same. So when she's at school and stuff, you said she uses eye gaze. Is that like on an iPad or an AAC device? What's that on? 

Grace: Yeah, she has a Tobii eye gaze. [00:19:00] She does not go into the classroom. She stays home, but she does. We set up her iPad and her eye gaze together, if that makes sense. So yeah, that's what she does. 

Deonna: Yeah. Allie can play iPad with their new technology with Apple and it's not eye gaze, it's like head control. So your head is moving and it's controlling it, but it's so nice because, she can play all the games her friends are playing and like the Roblox and all the avatar world and all that. And it's so nice how technology has come a long way. Yes, I think about what our kids' experience would've been like maybe in the nineties, and I'm like, oh my gosh. I'm glad we're in this time where they have some things to do and can be entertaining. Hundred percent.

So how has parenting a disabled child changed the way that you see yourself? 

Grace: Oh gosh, that's a good question. I will say I am somebody with high [00:20:00] anxiety. And in some ways I still really have it. But I also feel like parenting a disabled child has like really pulled me out of my introverted shy. I don't know if I can do this because you guys know. Like you have to do it. It doesn't matter if you don't want to or you don't think you can, you have to.

So like I I feel like I've advocated for her in several ways. Like we got SMA added to the newborn screen in Missouri in we started in 2016, got it added in 2017, and Missouri was the first date to get that approved. I spoke before the House of reps, the Senate and all of that. So public speaking oh my gosh. That was, it felt like a big deal, but. It also, like once it finally happened, it was like, yes. That's how Nella has pushed. 

Rhandyl: This is a big deal. That's huge. No, 

Grace: that is a big deal. Yeah. Now we have all, it's amazing screening. So that's pretty awesome because with SMA now there's three or four treatments, but they all work best when given as soon as possible, before there's any [00:21:00] deterioration. So like newborn screen is vital in catching that , 'cause most kids aren't showing signs at birth.

And then I was able to speak before the FDA in Baltimore about why we need faster access to medications in this rare disease community. So I had to write like a huge speech and I had to share the scary stuff and the bad stuff and 'cause in that moment to see how hard things are and why this is so important. Yeah. Being so vulnerable with that hard stuff. It's really hard to share that. I know you guys know but then yeah, like I would never have done that and I did that and that felt really big for me.

And then I also started and run a group for SMA Moms on Facebook called SMA Mom Strong. And we have 1,300 moms now, which is crazy to me. Wow. Yeah. I'm not usually one to start all of that, but it was like, I realized we needed a community with these specific moms and just seeing how it's grown and how we've supported each other and, it's just been [00:22:00] amazing. So I feel like Nella in this diagnosis has really pushed me that way into being really more outgoing. Mm-hmm. When I need to be

also telling doctors like, no, that's not how you're gonna do it. I never would've done that as a nurse, like ever. I would've been like, okay. But now, you know when doctors aren't Yeah. Getting it , you have no other choice. So I think a lot of that has been really good. I think I probably have a lot more dark humor now than I used to. Oh 

Rhandyl: yeah, same here for, yeah. 

Grace: Yeah. And I'm a little bit more like Hermity than I used to be. I just now I'm I just wanna stay home in my sweatpants with no makeup on and so I think that's definitely changed for sure.

Deonna: That's how I am. Like today, I caught myself, we just had to leave the house for an hour and a half, and I caught myself walking through the living room singing. I don't want to go anywhere. And my nurse is like, okay. But I just it's like cold outside. I don't wanna go anywhere. Yeah. I'm lazy about that. 

Rhandyl: No, I get that [00:23:00] as well. Like the whole advocating part because it's just crazy to think now how I stand up to the doctors when I'm like, no that's actually, you're assuming something that's, we need to redo this. Just, and it's very learned. And like you said, you were a nurse before and yeah. I have no. Fear now, of walking into a room full of doctors and telling them how it is., It is crazy how that changes.

But just, like you felt in the beginning, your mom gut and it is a thing that i, anytime I talk to a new mom, into the disabled world, I'm like, follow your gut. Whatever instincts are telling you is more than likely correct. And you just have to keep searching and keep fighting. And you learn that right off the bat. And I also am now the sweatpants stay at home girl, whereas before my daughter was born, I. Was never home, wanted to be [00:24:00] somewhere doing something with people very social, wanted to be out of town every weekend and now I'm just like so happy if we have a weekend where there is nothing to do. It is like the best, very best. So I can relate to that. Yeah. 

Deonna: It is crazy how you said that , you, you know, would've never spoke in front of huge crowds and things like that, and now you do these things that's happened with me too. Like you're forced to be brave from a medical type standpoint all the time and then that bravery just bleeds into every other part of your life.

I'm not scared to really do anything now. Like it's just my daughter wants me to live my fullest life, and she expects that of me. And so I'm just like, I'll do anything. I don't really care, and it's crazy. A lot of us are like that. I see moms doing all kinds of things they never thought they could do. And it's such a cool thing how our kids [00:25:00] empower us.

We I don't know about y'all, but I feel like Allie can't do some of these things, so I have to like, go for it and just do everything I can for her in a way. Yeah, I, I totally relate to that. So we know that grief is a part of this and there's also a lot of fun and a lot of joy and it's just so mixed together.

So how do you guys you and your husband and your family allow grief and joy to exist at the same time in your house? 

Grace: That is a really good question. I think therapy I see a therapist and my husband has, he probably needs to get back to it. And we've also had our boys in it get back in there. I think Trixie's too young, but our boys, even though I don't think with Corwin we've ever come out and said, Hey, your sister could die. But started piecing it together, I think when he was, I wanna say six or seven, [00:26:00] and figuring out that he knew that where, it's not like we ever kept it a secret, but we just moved forward with our life. Your sister's disabled. She has to go to the hospital here and there. We tried to do the best that we could, and so I think realizing that, I feel so bad my boys have to carry that burden. And eventually Trixie too. They have to carry that heavy thing. So that's been, really hard too. But I think also we try to do what we can to keep the other three from becoming glass children. And I'm sure you guys have heard of that, you know where the siblings get overlooked.

And we were just talking about Cure SMA has a Disney World conference coming up in late June, early July, which I would love to bring Nella, but like that Florida heat with Nella, , it wouldn't go. But then like my others. Mm-hmm. I know that would be a good trip for them. 'cause otherwise they're not gonna get to go. But then it's I don't know, like I've stopped sharing this stuff mostly on social media because I've gotten comments from people who don't. Do this. And it's I don't [00:27:00] understand. They really understand the heartache that's right there when you have your other children on a trip because you're giving them that love and that one-on-one and that normalcy, but your heart's not. Your heart's not there. 'cause it's, it can't work or whatever, no, I get that. So that's really hard too.

But I also think having the other kids has been so good too because Nella gets out to their football games and we go on bike rides and we go out for walks. And , we have this trail that's by our house and we go down there and we go get ice cream and we go back and her siblings I think, have brought her so much joy that seeing the four of them together has been really joyful.

Rhandyl: Yeah, I can relate to that , so my disabled daughter, she's my oldest, and then I have one other child, my son, and he is four, they're five years apart. And he knows that his sisters disabled and that she can't do things that other typical kids can, but it is just so funny how he just naturally, involves her in everything. But I know that the time where it's coming [00:28:00] whenever it clicks, and that he does have to carry that burden. And so , the whole glass child thing, like Deonna have talked about that in previous podcasts. And we've actually talked to siblings that are grown and that's something I'm always so hyper aware of, is. To avoid that at all cost. Yeah.

But then , like you said, on the other hand, there's so many times where even just going to the grocery store, like just loading my son up , it's so easy and I never been able to just load Remi up and take her anywhere by myself. I've never done it. Because I just feel my gut is not safe. Something's going to happen and it's gonna end up in this dramatic car . accident or me like, yeah, it's just not safe situation. So for sure. Yeah, so just little moments like that throughout the day. Not even like big trips, but you just feel guilty because, Remi loves to, people watch and she loves [00:29:00] to to go out and about, but it's not always possible and so Exactly. Yeah, I feel that for sure. Yeah. 

Deonna: I think you brought up a good point too, about siblings getting counseling because like when I got home after the hospital with Allie, I was like trying to get her into counseling really soon and we were getting all that figured out because she. Even though she was so young, I was like, oh, she needs to talk to somebody.

Her whole life has changed and she knew it was different, but we got my son into counseling too. I think he needed it worse than she did. 'cause he was older. We had that big talk with him. He knew things were not gonna get better and things like that. And I had no idea. Like sometimes the counselor would tell me, Hey, this is like what he's worried about, or this is what he's saying, which, I don't know if people think that's right or wrong for a counselor to be telling you, but I needed to know like what his [00:30:00] concerns were or whatever at the time. And there were things that she would tell me he was worried about. I had no idea. Yeah. And so it's really good. I think any kid could benefit from therapy, but especially siblings of disabled kids.

'cause my son already at eighth grade will say things like, yeah, when she lives with me someday. And you're just like, wait, you're already thinking about this. And I'm not even sure if that's something that's gonna happen, but like he's already assuming his life is going to be intertwined with her, which I love that, that he feels, that sense of connection with her. But then I'm like, on the other hand oh my gosh. Like he thinks he's taking care of her forever, and so it's just like we were saying, it's so much grief and joy every day mixed together. It's crazy. But yeah. I like you bringing up that your sons do the counseling.

Grace: Yeah. And , exactly like you said, I think they needed it. They [00:31:00] carry so much more than. We really think they handle so much of it with so much grace, like you said and they're great with all the other disabled kids. , They're not even phased by it. But then there are stuff that they carry that you wouldn't even, like you said, you wouldn't think of.

Deonna: Grown up problems. .

Rhandyl:   Rhandyl here I am a pediatric physical therapist assistant, working with this population over five years. I have treated dozens of children with cerebral palsy. Something I've always been passionate about is early intervention, standing protocols, and the importance of hip abduction. One in three children with CP will develop progressive hip dysplasia. Hip dysplasia can lead to hip dislocation, which can affect their ability to sit, stand, or walk, as well as cause pain.

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 so I know you mentioned that you started this SMA Facebook group, which is amazing , so I'm sure that brings you a lot of community. But throughout this process with Nella, when do you feel the most alone and what helps you through those times?

Grace: Oh, I think the most alone is usually if she's been in the hospital and I don't have a clear path for it or, like I said, those those 10 days after her trach surgery. And I'm sure you guys feel this way too, but it felt like there was so much on me to figure it out.

It's like the doctors can only do so much, but I'm the one who knows [00:33:00] her, and so I feel like during that time I didn't eat. I barely drank. I lost I don't even know, I wanna say like 10 pounds, like in a short amount of time, maybe not that much. I just remember everybody was like, trying to get me to eat. But you just feel like it's all on you. Yeah. You're like, physically can't, I know I can't swallow food.

And then there's been one time when Nella had a really bad plug and we couldn't figure out what caused it and I remember just being like, you just literally feel the weight of the world. And my husband is fantastic. He, I have a co-parent and absolutely. Everything I can do, he can do everything he can do, I can do, he does do trach changes a little bit better than me. But we won't talk about that. But it's even then, like he's so clinical at looking at what is in front of us. Whereas I don't know. I feel like we just know our kids and we know we we know our girls like a sixth sense and it's yeah, they might be presenting this way. But it's what is X, Y, Z going on? So I definitely feel that way.

I hate saying that my mental health is tied to how well she's doing, but in a lot of the times, like it is, like during that time when , I [00:34:00] don't know what's going on. It's like literally the only thing you can do is pray and it's almost like. just surrender. I don't know. I'm here , help me. Like I don't. It's such a helpless feeling when your children are like that and you dunno how to go forward. 

Deonna: My mental health is completely tied up in how well she's doing. Like she's, my daughter's been doing really well lately, so I've been all happy and you know everything. But it's really hard 'cause we all know that one moment. Could change our whole life, and I don't think other moms think that way. Like they don't contemplate their children's mortality on a multiple times a day basis.

Like we have to. It sucks, and I can feel if any bad thing happens with her, or if we lose a nurse or anything, that makes me feel a tiny bit unstable. Yep. I can totally freak out. And when you said you don't, you weren't eating, I remember [00:35:00] right after Allie got hurt, I remember laying in my bed crying and my mom is literally trying to put a cracker into my mouth and I was like eating it and I couldn't even swallow my food.

I didn't even know there was a sadness or a, stress that could make you not able to eat or drink anything. Like it was crazy.

Rhandyl: Yeah. , Anytime we have a emergency or a hospitalization, that's when my world is crashing down and that's when I'm definitely the most vulnerable. And same thing like you said, when, all you can do is surrender and just be like, because you're not in control of, as much as we wanna be, be anything, we are not in control. And those moments remind us the most and when things are going great, it's great. , But in the back of your mind, I feel like you're just always don't get too comfortable. And that's something that parents like us can relate to in a way. . It's something, I don't wish [00:36:00] upon anyone, 

Deonna: Watching your videos and stuff, it looks like you and your husband have a really fun relationship and everything, but what relationship advice would you give other parents who have kids with disabilities?

Grace: I think a big thing would be saying, how they say you grieve differently, you really do. And I'm very much a verbal processor and I have to talk about all my feelings and talk about 'em again and again. And my husband is very much I need to go work out. I need to go work this off. And I think just being , understanding of, that's what he needs to do. And I think as we've gotten further along, we're 12 and a half years in almost, supporting each other and the little things that bring us joy or make us happy, so his running a race or doing something physical he bikes and he runs and he's just super physical. Person. And I'm like concerts. I love going to concerts and singing my heart out and dressing up and he's so [00:37:00] supportive of me doing that, or if I'm like, I just need to take a nap because I'm going to cry. He's okay. So I think my biggest advice is just honor how the other person has to process through it, and also to be so grateful. , I always tell him how grateful I am for everything he does, and he's great at saying it back to me.

And then also, we've had to discover too that we just do some things with Nella differently. I have my routine and I do things this way, and he has his routine and does things this way, and neither of them are wrong. They're just different. And so we've had to learn to not quarrel on it. And if I go in and this isn't exactly how I want it, like just let it go,

Deonna: that's a big one because like for example, us, we were trained the exact same way by the same people. Yeah. And we have interpreted that differently. And yeah, there's lots of times my kids are the biggest narcs ever.

Like all you know, we'll be doing something and they're like, that's not how mom does it. And I'm like, shut up. I'm trying to be cool and you're telling on me. [00:38:00] So now I can't do it this way next time. 'cause now he knows right? But my husband's very organized type A and gets everything done in this way better way than me. Like we always call Dane the A team and I'm like the B minus team, and it's just not gonna be done the same way with me. Yeah. And all the nurses even know it. They know they have to do things to a higher standard when like my husband is the one with them. And then with me it's yeah, okay.

Whatever. But that is so true. Like you have to be okay doing it differently because we're totally different, like personality styles and stuff. Yeah. But yeah. Yeah. That's funny. Definitely. And telling each other too, you appreciate each other because we all work our butts off. We all have our different roles we play.

I'm sure y'all are the same way. Like we have split some of the roles like. I deal with all the nursing. My husband deals with the DME and the supplies and all that. I deal with all the [00:39:00] doctors and the insurance and making appointments and things like that. You have to figure out those roles and do them, but tell each other thanks, like thanks for taking care of that, yeah. Because I don't wanna do all of it. It drive me crazy, but he definitely doesn't wanna do all of it. Yeah. But yeah, saying thank you is a big deal in our world. 

Rhandyl: Yes. Yeah. And I like that you mention, you have to realize that you each process things differently and have different ways of coping with things or just analyzing things. And so I know at first that was definitely hard for me, I am not the best verbal. Processor and neither is my husband. So that can sometimes be an issue because we're both internally processing things, but then later on it gets brought up and we're like, oh yeah, like why didn't we talk about that? I'm like, oh my gosh. So I need to be better at that.

But okay. So you [00:40:00] mentioned you love going to concerts and your husband is like, yes, go take a nap. But how do you find time for yourself to do things that make you happy? How do you prioritize that? 

Grace: Oh gosh, that's so hard. I'm probably not the best at always prioritizing it as so much as I am like, I guess scheduling it and then knowing that, I've got that to look forward to. Yeah, like I said, like I'll plan a trip to. See Hanson with my girlfriends or whatever, and I know I've got those three days. But I feel like sometimes just a day-to-day thing is like being able to take a shower and maybe cry in the shower or go get your favorite drinks. Yes. On the way to the pharmacy 

Rhandyl: Shower cries, man. 

Grace: Yes. Or calling up another SMA mom or another disability mom and being like, you won't imagine the day I have. Or you couldn't imagine. Or maybe sharing a meme on Instagram. That you don't think everybody's gonna laugh, but you find it hilarious. I don't know. I think that's it's just like the micro [00:41:00] glimmers, that little small things that sneak in there sometimes. That's what you do.

Rhandyl: Yeah, I like the scheduling thing. I need to do that more. I recently did that with a spa day and I scheduled it two weeks in advance and it was like I had this thing to look forward to. Yeah. And so I feel like that's great advice is to just book it, get it on your calendar and then make it happen. 

Deonna: Yeah, I think looking forward to something is so powerful. Like sometimes, if I know I have a trip, I get to go on, I obviously have fun on the trip. I love the trip, but just that idea of knowing for months out that I get to go do something fun. That's a huge part of it for me too. I love planning trips way out in advance and then getting to think about them and get all excited. Yeah, looking forward to something new future. Yeah. Nice. 

Rhandyl: But then also on a double-edged sword, Deonna knows this. , My husband and I recently went on this big anniversary trip, like it was biggest trip we've done since we've had Remi. And it's taboo for me to even talk [00:42:00] about it out loud. Like it was booked, done, paid for going to happen, but. We all have had those times where you have something like really fun and exciting planned and then something really bad happens and it doesn't work out. Or just like our life in general was not planned. We planned to have these normal, healthy babies to grow up and be normal, healthy, typical kids. And that didn't happen. And so I think, at least for me, I need to get over the whole making plans thing because I feel like sometimes if I make the plans, then I have this terrible feeling that it's not gonna work out. But I'm working on that, so I'm glad that you gave that advice for sure. 

Grace: I guess I should say I did have to cancel. Yeah. Three trips since September, I was supposed to see Jonas Brothers. Oh, and then they like moved the date and it just wouldn't work with the momming and nursing schedule and all that. And then I was supposed to see him in Indiana, and then my mom's had a heart attack and I had to fly to KC. And [00:43:00] then oh my gosh, I was supposed to go with my sister-in-law's to South Carolina, but then Nella had to get admitted to get on her new vent. And so it's like same thing like, oh those, and then it just doesn't happen.

Rhandyl: Hey, but you kept rescheduling. That's the key right there. Kept rescheduling,

Grace: kept trying. I did finally see the Jonas Brothers. 

Deonna: That would've been so much fun. So we were talking about you being a nurse, but do you think that's been a good thing, you being a nurse and then being the mom of Nella and everything? Or do you think it's made it harder? Like how has it affected your motherhood being a nurse and knowing everything that, you know? 

Grace: Honestly, I think for the most part it's been really good. Like when she got her G-tube, I knew it. I wasn't phased. It wasn't a big deal. I'm really glad that I had that training, honestly, because I can't imagine mm-hmm. how hard it would be being thrown into that world and really not knowing [00:44:00] anything. I think even going into her trach surgery, it's like I know the trach, I know about it, but it was still this huge, terrifying thing. Even though I was a nurse, so I'm very glad for the most part that I have that I feel like it can sometimes send me over the edge to be like what if I'm missing this? I feel like I know too much. Like I sometimes feel like being a pediatric RN and an SMA mom together. Just makes me think the worst is gonna happen all the time. Yeah. But I'm also very glad for that, for sure. Knowledge and that solid base that I had going into this.

Deonna: Yeah. Oh yeah. It's crazy. Coming from nothing and having to learn medical knowledge. I still sometimes can't believe. The things that I've learned. It's crazy, but yeah, there's times where sometimes our nurse will be really upset or stressed over something and I'm [00:45:00] not. Like you were saying, they know more than me about how these things are all connected. And I don't know. I feel like there are pros and cons. It's tough. 

Rhandyl: Yeah. Yeah. My husband, he was a nurse when Remi was born and now he's a nurse practitioner, but I was a physical therapist assistant, and so we both were in the medical field so on the nursing side, like I was oblivious at first , 'cause I didn't work in the hospital environment. I worked to like an outpatient clinic. But my husband he had worked in ICUs and he was very aware not with pediatrics, he does not do pediatrics, but he was very aware of all the things that were going on.

And it was a blessing, but also not because he knew too much especially early on when everything was like, super touch and go. And he did guard me from some of that. And then the more I learned then I was like, okay. Yeah. But , he also saved her life in multiple multiple [00:46:00] times in the hospital.

Literally one time there was three feet of air in her IV line, and he caught it she was being transitioned from an OR to the bedside. And thankfully we weren't even supposed to be there at bedside, but one of the nurses had let us in and we were there when they were rolling her back and he caught it. There's so many scenarios. , It was such a blessing that , 'cause he just naturally knew. He was just looking at everything and he just was like, Hey, like that's not right. And clamped it off it was crazy.

So what does burnout look like for you and how do you recover from that?

Grace: . Honestly, I feel like. Burnout is probably way more mental for me than it is physical. I do have that physical exhaustion, but I feel like the burnout is like after there's been an event and you get everything stabilized and , your kid's back to baseline or whatever, and then you just have that let down [00:47:00] of what just happened. And I feel like that when I have , my burnout where it's I just feel like I lose it almost, not lose it, but I'm just so distraught over what just happened or could have happened. And then I feel like usually burnout for me is I just need to take a really long nap, or I need to go to bed early, or I need, that's my go-to is I just need a nap. And I am very lucky that my husband is so supportive of that.

But I do feel as I've gone further along in this journey, doing things that prioritize myself, I feel like I've figured out more things. And the day-to-day to keep that from happening.

But that definitely does still happen. It's I don't know, it's like there is just this like ebb and flow of this whole, 

Rhandyl: there is rollercoaster.

The trauma comes up and down and

Grace: Yeah. And then it's I think I know too that my, 

Deonna: yeah. Burnout is tough. 

Grace: Yeah. And my children, their wellbeing is a lot of based on my wellbeing, [00:48:00] so yeah. As much as I'd love it, I don't know. Lock myself in the room and cry for however long I can't do it. 

Deonna: Yeah. Yeah. I saw this thing the other day and it was some study by a college and it was saying that kids happiness when they're adults is directly connected to. Their mom's happiness when they were in the home. Not the dads like, the dads irrelevant in this. It's the mom. And I was like, reading this and thinking, what kind of pressure is this that, my kids are being that affected by whether I am happy and having a good time and having fun. In our world that's so much pressure. But I do think it is so true. My kids feed off of my Oh yeah. Vibe way more than they do off my husband's, whatever's going on with him. But

yeah, I think it's interesting what you said, your [00:49:00] burnout's mainly like a mental or emotional thing because I get a little burned out physically where I'm like, whoa, I'm tired. Like I, I'm sleepy or whatever. But it's all mental usually for me. I just, I get real overstimulated and I like, don't want anyone talking to me or touching me when I get to that point. And it's really hard 'cause I have a very lovey-dovey teenage boy who wants to just be hugging me and all this and all, up in my space. But I get real overstimulated when I get burned out and then I'm just like, I just need you to be, back little.

But yeah, it is, I think people think that we're just like, oh, I'm just tired. But it's a mental exhaustion. I don't even know how to explain it to people. It's a little, and you're never like, dog night asleep doesn't fix it. No. 

Rhandyl: You're on high alert all the time. 

Deonna: Yeah. Yeah, that is definitely true. So to wrap up, this is our last question, and [00:50:00] your daughter's cognitively, able to hear you and know what you're saying and all these things, but what would you want Nella to know about how you see her? She probably knows, but, what do you want for her to think about that? That's gonna make me cry.

Grace: It's okay. I dunno if I could say that without crying. I just want her to know that she is the most special, precious, bravest. Remarkable, miraculous girl. And I feel like I am so lucky that I get to care for her. I am so lucky that she came to me. I feel like I've pulled back a lot on kind of what I say because I never want her to interpret it as her being a burden, because that's never ever. No. It's a joy and I truly feel we're doing holy work by, caring for these children. And I just hope she knows that she's changed the world and she has changed our hearts. And we're just the luckiest, most blessed people to be able to have her every single day. And also, if she could both sleep, it's [00:51:00] beautiful at three in the morning. I love that nella likes to wake up at three.

Rhandyl: Oh, you sound like we live the same life. Oh my gosh. So does my daughter. Oh. Knew that. It's always, whenever I am. With her and no night shift nurse. Yep. Yep. Yes. That, those are the times where I'm like, you better be glad that you're cute and that I'm like know because, we're talking about burnout like the only time I'm physically burnout is when I'm like, so sleep deprived. Yeah. That I like physically cannot. Yes. Do anything. Especially like mentally. That is my terrible. Like monster of a person. My children do not need to be around me if I don't get my sleep, especially if it's multiple nights in a row, like I'm a bear. So I the same way. Yeah. 

Deonna: What about three or four in the morning? I don't know, around three or four in the morning. And I'm like, and it's never, when my husband's out there, [00:52:00] like when he is out there, she's like an angel and sleeps all night. At 9:00 AM the second I'm out there and it's I don't know about y'all, but like I'm sleeping out there and you hear her voice and you're like, yep.

Oh no. She's up and you're like, please tell me. That was like a weird dream. And I just lay there silent and I'm like instantly getting full on depressed. And then you'll hear her say it one more time and you're like, oh, yep. She is definitely saying my name. Dang it. Dang it. Dang it. Oh my gosh. Yeah. And it's so funny to, I love, we love 'em, but oh my gosh. 

Grace: I know. And I feel like that's when Nella is like her most chatty self. And I'm like, girl, Maddie's asleep. Bowen's asleep. Cor went. I go through listen to everybody's asleep and she should be asleep. She's always ha. I'm like, Uhhuh.

Rhandyl: I always say that when Remi does that in the middle of the night, she's cracked out. She's like going crazy, talking like, yes. Talking more than she does [00:53:00] during the day, like crawling around her bed, throwing her stuffed animals everywhere, like. Going crazy and I'm like, girl, I just wanna sleep longer.

Deonna: They do not care. They do not care. No. Allie has one of those, like Randall had told me about those. But you know those like Tony's where you put the different characters on and it reads to you? My mom bought her one of those creative Tony's where you can record anything you want and it plays, and we were recording, I was reading a bunch of books on it so she could listen to them at night and then she read herself some books, ally did, and I was like, we need to record in here.

Go to sleep. Don't act crazy, please go back to sleep. Like my whole speech that I say every night when she wakes up early, I'm like, let's just record that on the Tony and I'll pop it on there so I don't have to like actually say these words for the millionth time. But oh yeah, they're stinkers at night. Those girls are stinkers 

Grace: and I'm always like, that's [00:54:00] hilarious, Ella. If you're awake now, you cannot be grumpy during the day. You are choosing to be awake. Yeah. And she's just

Rhandyl: I dunno. Oh yeah. And I give her a hard time the whole rest of the day when she keeps me up all night. I'm like, oh, you're tired. No, sorry. You don't get a nap. If I don't get a nap, you don't get a nap. Yep. You have therapy, you have school. Sorry. Yeah, sorry, 

Deonna: Allie Allie does that too. She'll be like a nightmare all night. And then that next day she'll be like, I wanna come home early from school. I'm tired. I'm like, no girl. You have made decisions and choices and you are now facing those. I cannot oh my gosh. Gee. Yes. It's, yeah. Our kids still get in trouble. Everyone like ffy, I, it's not immune to that, but no. Oh, they're stinkers. 

Rhandyl: Grace, it was so nice talking to you. This has been such a good conversation and I'm so glad to thank you guys so much for having me finally talk. Yes. And we will add your Instagram and [00:55:00] things to our show notes, but is there anything that you would like to share with our listeners for how they can follow you or find your SMA page or anything that you might want to share? 

Grace: Yeah. I am @bowennellaandco on Instagram, which I named before I had a fourth child, so I should probably change that. But that's my personal Instagram. Oh, I do a good job of updating on Nella. I also do have a Facebook page for her called Prayers for Nella, but I honestly have not been fantastic at updating that lately. And then , if there's an SMA mom on here, we would love to have her join our SMA mom strong group where we support each other and, we, we've got kids of all different abilities, but we're all there for each other.

Rhandyl: Awesome. Thank you so much. This has been a pleasure.

Grace: Thank you guys.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.