Brooke Raising Corben

Deonna:

Hey y'all, welcome to Raising Disabled. Today we have Brooke with us, and she is one of our friends that lives in Lubbock with us. We both met Brooke this year in different ways, and we'll kind of talk about that here in a minute, but she's kind of in our group. We go eat dinner together sometimes, and we are just so excited for her to be here, so I'm gonna just start out. Tell us about your family. 

Brooke:

My husband and I, Kirby, have been married for almost 10 years now. We have two boys, our oldest is nine, his name is Crue, and our youngest is Corben and he will be seven in December. We were both born and raised here in Lubbock and our nine year old goes to Shallowater and Corben is currently homebound from school.

Rhandyl:

And Corben is your disabled child, right? Correct. Okay. So kind of tell us about the time  leading up, how did you find out about his medical issues? Was it in utero or? 

Brooke:

Yeah. So Corben has down syndrome and we did find out when I was pregnant with him, we had the Progenity blood work drawn to find out his gender. It took 12 days to get those results. And I knew something was wrong because they told us we'd have them within a week. Right. So when they called me on day 12, I was expecting her to be like, you're having a boy or you're having a girl. And I answered the phone and she was like, well, we got the results back and it is positive for trisomy 21.

And I did know about Down syndrome. I had worked with adults with Down syndrome and other disabilities. But yeah, it kind of caught me off guard because you never expect that it's going to happen to you. And I'm a nurse. I was working at the hospital at the time and I remember getting the phone call, and I stepped in the linen closet and just broke down. And we were about to hang up before she had even told me he was a boy. And so she was like, okay, well, we're going to refer you to maternal fetal specialist. And I was like, wait, like, is it a boy or is it a girl? And she was like, oh, you're having a little boy. 

And so I just kind of like stayed in that closet for a while, but then I had a rest of a shift to finish. So I had to go out and finish working, you know? Yeah. I did call my husband in that linen closet and he's very much a person that's like, it's okay, whatever life throws at us, we've got this, we can do this together. He instantly is like that about everything and I'm like, but wait, like, really? You know?

Deonna:

We have to freak out first. Oh man. Do they always check for that genetic thing when they're checking for what the gender is going to be? Because I had that test too is that something you choose or is it just something they do anyways? 

Brooke:

It was offered. I think the Progenity specifically was fairly new when we got pregnant with Corben. Because it wasn't offered to us with Crue, our nine year old. Right. But I think there's different ones they can do that test for different chromosomal abnormalities or genetic abnormalities. But we just got it drawn because we wanted to find out the gender. Yeah. Not expecting anything else. Other news. Right. And then. Wow. So. Oh my goodness. I was 10 weeks 10 weeks pregnant. They can draw that. It's pretty incredible. That's nuts though. 

Rhandyl:

So, you just told us when you very first found out about it, but kind of walk us through what those first few moments or days after receiving the diagnosis and how did you feel?   

Brooke:

Yea, so we got the referral to maternal fetal specialist, but with, I mean, the first moments, it definitely caught me off guard. I don't think I knew what to think. I think my first thoughts was like, no, that's wrong. I'm only 24, you know, all the misconceptions, even I had a down syndrome at the time was like, you’re an older mom that gets pregnant and still their chances are higher, but that's not necessarily how it works. Now I know that. So it definitely, I needed that moment to myself in that linen closet to fully process it, but I don't know that I fully processed it for a couple of days.

But I would say that we had peace about it very quickly. My husband, like I said, he's very much a person that's like, we got this and he helps me in those situations because I'm very much one that’s…Reactive. Yeah, very reactive. 

Deonna:

And Well, that's a lot to take in. 

Brooke:

Yeah, and you obviously, throughout all of it, you grieve the child that you have always envisioned. And yes, we had Crue who was two at the time. Yeah. But then, there's things that you have to think about the sibling relationships and what those are gonna look like? Yeah. Their future? 

But I would say after we first found out we did get a sense of peace very quickly. Very early on went to Maternal Fetal Specialty and even they were like, these results are probably wrong. You're only 24. There's no way. And then we went in for monthly ultrasounds, which was really cool to get to see him so frequently. And they started slowly seeing little markers that, I guess, every chromosomal abnormality, there's markers they look for specifically for each one. 

And so he had the thickening of the nuchal fold, which is the skin in the back of the neck. And then he had his long bones, so like his femurs were measuring very short. Oh, okay. And then he had three spots on his heart, which they call them echogenic intracardiac foci, which is small, bright spots on his heart that could be indicative of a congenital heart defect. Right. And then his kidneys were, he had bilateral hydronephrosis, and eventually they took him a month early because of that. My amniotic fluid was shrinking and his kidneys were enlarging, so he was no longer like peeing out that amniotic fluid that babies do. 

Brooke, Deonna, Rhandyl:

Gotcha, yeah, okay. I didn't know that babies did that. Yeah, so they swallow it. I don't know anything. There's a little fish in there.

Deonna:

I know, right? Oh man. Okay, so when he was born, you got to have a semi normal birth experience or?

Brooke:

So it was a scheduled c section. just to prevent complications. Yeah. And they wanted to take him that month early because of his kidneys. A NICU team was in the delivery room. But he came out, he let out this tiniest little, one little screech and he was fine and he didn't have to go to the NICU. He was very healthy. His APGAR scores were great. We did stay an extra day in the hospital, but it was just as precautions and running more tests. And they did take blood from his umbilical cord right after delivery and ran that full genetic panel.

It takes about two weeks to get back. But he, he had the cutest little almond shaped eyes and he was very low tone. Like he just felt like a little noodle. So we knew, and I knew even in utero when they were like your chances, even at delivery, they were like, Still don't know a hundred percent. We'll just have to see after delivery. They offered an amniocentesis almost at every appointment and we just refused. Yeah. It didn't change anything. Right. 

Deonna:

What is that? So, I've heard that word before, but 

Brooke:

Yeah, so they stick a needle in your pregnant belly and pull out amniotic fluid to test and they could see that he had for sure.. Like a for sure a for sure diagnosis and sometimes people go different routes when they get results of that, you know, but it didn't change anything for us. Yeah, right. We just wanted to continue with the pregnancy regardless, but had a great birth. He was great, got to stay in the room with us, and we just stayed an extra day, and he never had any NICU time, so. 

Deonna:

Wow, that's amazing. Yeah. 

Rhandyl:

Okay. So most people are familiar with down syndrome but kind of give us a fifth grade level understanding of kind of what that diagnosis means. I know it's a pretty umbrella diagnosis now, cause like we just said, patient specific. 

Brooke:

Yes. Yeah, very much so. So it is lifelong It's not something that they will ever outgrow. It's not curable. It's where someone is born with three copies of the 21st chromosome. There's actually three different classifications of down syndrome and so the most common is trisomy 21, which is the most common type where it just happens and that's Corben's case. 

And then there's translocation, which is the one that's inherited and that accounts for less than 1 percent of the down syndrome population. And I think that's a misconception. Oh, wow. Because people think that a lot of times it's hereditary and it's really not that common. 

And then there's mosaic, which is where the person only has the extra chromosome in some of their cells and not all of them. So their features might look a little minor, but cognitively and mentally it could affect them the same.

Deonna:

Well, I was going to ask you what kind of prognosis they gave you, and that might still be an applicable question, but you find out later, he's not this typical child that has down syndrome.

He does some different things. Right. So, I mean, how did that go? 

Brooke:

So for Down syndrome in general, the life expectancy for them is way well into the sixties now. Yeah. 

Rhandyl:

Which is so, it's such a miracle. Like, I mean, 'cause even just in our lifetime that's doubled, I would say. I mean.. Oh wow. 

Brooke:

I did look at, in 1983 it was 25.

Deonna:

What's changed? Crazy. I mean, like what's the difference, I wonder?

Brooke:

I think resources and research and physicians, knowing how to take care of you. Knowing what to look for now after different studies and Whoa. And like with Corben, it's very individualized and so what affects a person with Down syndrome could be different from what affects the next person with Down syndrome. Right. A lot of them only have the Down syndrome and could have some developmental delays and those types of things. Whereas with Corben, he is very medically complex. Yeah. And we don't blame that on the Down syndrome. I think it exposed him to higher risk to have different medical conditions.  

And they also did just get recently get a diagnosis of autism. And same, there's no cure for that, but there are therapies that help with their behaviors. And there's a lot of adapting as a family to ensure his sensory needs are being met. Yeah. 

Rhandyl:

Sure. Yeah. So, like, what are the hardest parts about caring for Corben on a daily basis or just in general? 

Brooke:

I think the unknown of what the future holds knowing that Corben will more than likely live with us forever. Yeah. He is nonverbal. It's a big one. And I, will probably have to be his voice his entire life. Mm hmm. And this is a hard, heavy one, but knowing that ultimately my husband and I will have to either outlive him or in the event we don't, like, brother Crue taking him in and having to adapt his family towards that. And neither scenario is fun to think about, but those are the things that when you have kids that are disabled you have to think about.

Deonna:

Oh yeah. We can think of some. Oh yeah. We have to think of some dark stuff. Real dark stuff. Real early on. On a frequent basis. It's a tough one. It is heavy. 

Brooke:

And at times it's hard to see the good that can come from the bad, this is more geared towards his autism, but the lack of affection, him being nonverbal, the lack of eye contact. Like getting to know him for who he is and getting that honor as his mother and getting to experience him daily, even through the lack of communication and all those things, I still feel so lucky.

Although it doesn't take away the hard days, I do wish he would initiate affection towards me or be able to call me mama and that's not out of the picture completely yet, but I strive to hear him say mama or, you know, anything like that. Oh yeah. I know it'll happen, but that's hard just to not have that.

Deonna:

A waiting game. Yes. That's really hard. What did you know before about this diagnosis? Did you know quite a bit about it since you were already a nurse? 

Brooke:

Yeah, I did. And I actually, when I was pregnant, I was working at the hospital part time, but I was also working part time at a adult day care center where adults with any kind of disability were able to go.

And so God kind of like painted. For sure, I was gonna say. Wow. And I've always, even through school and stuff, I loved the special education kids and I would engage with them and I just had this passion for them early on. And I always dreamed of working with adults that had intellectual disabilities of any kind or physical, whatever it may be.

So I knew quite a bit, and through school we learn about it, but even through nursing school, the things they teach you, I'm like, I wish I could go to that nursing school and be like, those are not the features, and then, you know, it's like the pictures they showed us of Down syndrome, thinking back, I'm like, that's not good, not good, we need new ones-resources and pictures. 

Deonna:

Right. Oh man. That's crazy how you're working with a lot of people who had Down syndrome and then you had a Down syndrome kid. Like I've had moments before where you think like, wait, was that God preparing me for this thing that's about to happen to me? And you don't like it at the time, but then you look back and think, whoa, that was  connected somehow. It's pretty cool.

Rhandyl:

It was really cool. So what have been some of the positive, unexpected, surprising moments that you guys have experienced with Corben? 

Brooke:

Through him being nonverbal, the amount of feedback and joy we get from him daily, like, just his excitement for the little things even waking up in the morning. He's the happiest thing in the world. And despite all his trials and difficulties with everything he is just you will never know you would never look at him and know everything that he has gone through. Just ready to start his day? He is.

And he thinks being outside is the best thing in the world. Nice. And he truly takes it in. Like, he'll get his foot and rub it over the grass. Oh my gosh. And just like, look at me and like, So cute. Just smile. Aww. Like, he loves it so much. Just the little things. And it really humbles us, cause we're like, Wow, like, We need to find more joy in the little things like he does, and it's just eye opening.

Deonna:

I feel like a lot of disabled kids teach you that, to just actually see what is right there in front of you, because that's what they see and what's important to them, whereas we're thinking always the next thing, next thing. And all of our kids do that, so. Yeah, just like soak it all in. Yeah. Yeah. You truly do. It's a big deal to us. Especially when you have to have all these dark thoughts all the time, it's nice to have breaks from that. 

Yeah. So what or who has helped you the most during your experiences raising him and what has helped Corben the most too?

Brooke:

So my husband is literally my best friend and he is Corben's favorite person in the entire universe. It's probably cliche to say, but like without him, there's no way, and I know we all probably feel that way. Like. Without your spouse through this, having a disabled kid can make or break a marriage and there's so many statistics. Oh yeah. And it's definitely made ours better. That's good. He knows the right things to say and we're a perfect match because, like I said, like he's very grounded and he's like. This is what we're dealt with, we're gonna deal with it and this is how we're gonna deal with it. And I'm like, oh my gosh, like, oh my god, you know, just freaking out and he's like, breathe, breathe. Oh, okay. Okay. 

And then Crue, my nine year old, he is just the sweetest, tender hearted kid you will ever meet. And God also created him to be the perfect sibling for Corben. Right. And he orchestrated that even before Corben was even a thought. Mm hmm. To us. 

And I think what's helped Corben the most..I mean, while he was still in utero, we made a decision as a family, Crue involved, at two years old that we're not going to treat him any differently, which it can't always be the case because, he can't do a lot of the things neurotypical kids can do. But whatever he has an interest in, we're going to fully support him in that and continue to do those things that he loves.

And then obviously, you have the therapies which help your kids and that's going on a different tangent, but but it's also important to know when enough is enough of those because it's easy to get overwhelmed with all the therapies. Yeah. Oh, for sure. I think it's also been important and helped him when we take breaks from all the therapists. 

Rhandyl:

Yeah. Yeah, therapy breaks can be really important, I mean, even, like, just coming from, from me and my perspective and the work that I do, there's definitely comes a point where you can just tell that some kiddos just need that break from the hustle and bustle and, yeah, the grind of it all. And so do the parents, honestly. It's a lot. 

Brooke, Rhandyl, Deonna:

I mean, people in and out of your house. I can say that for myself. Yes. So. Yeah. But, yeah. Our houses are never empty. No.

Rhandyl:

Okay. So what advice or what would you tell a parent whose child may be going to get this diagnosis or a difficult diagnosis in general?

Brooke:

The first few days of the diagnosis can feel really heavy and it's normal to feel like there's no way forward. The unknown is really scary and you have every right to fear the future. But even though it feels this way, it's really not the end of the world, your kid is capable of so much more than anyone will ever give them credit for.

Right. You have to be their voice and you have to allow people to know and see their worth. And I cannot stress the importance enough of finding people who get it. Just like us three here there's no words to describe when you have somebody who can empathize and get it. And that your child will open your eyes to so much pain, but so much joy at the same time. And they're so worth it. 

Rhandyl:

Yeah. Like you said, someone that gets it. Finding people who get it. I mean, you reached out to me back in March, and we didn't even know each other. You got my number maybe through Deonna. But you reached out to me whenever Corben was in a really bad hospitalization. And he was coding a lot and there was lots of stuff going on, and I just remember you were just reaching out to me asking basically for prayers and advice. And I felt like I was the one that needed to be there to support you in that moment and God was giving me all these things to tell you, I don't know if I helped at all, but I felt I just prayed and prayed and prayed for you guys throughout that whole process and was reaching out to you and checking in on you. And then it was so long after when we actually got to meet each other. But of course we kept up via messaging and social media and things like that.

But if you want to go through like, you know, this was just this year and.. it's still very fresh. Yeah. So, I mean, there's a lot that's happened recently outside of just his Down syndrome and autism diagnosis so you want to go through some of that?

Brooke:

Yeah. So, I met Deonna in February and that was also a Godsend thing because the next month Corben would get very, very sick and I would need Deonna through those times as well. So Corben started having oxygen saturation issues in January with no respiratory distress. And so we were thinking cardiac in nature at that point, got a new referral to our local cardiologist,  but then Corben got croup in February, which tanked his sats even lower. And so from mid February to mid March, we were just battling low saturations, but able to kind of maintain it at home, watching him closely. He wasn't going to school. 

And then in March, we were admitted and within six hours of being intubated. And, wow, yeah, he just went down health fast and so we were in the ICU, he was intubated for about five days the initial time. His ENT took him to the OR, bronched him, cleaned him out, got him extubated, came back to the ICU and for two days he was just struggling and he was on high flow nasal cannula and a venturi mask, hooked together, still not maintaining his sats. At this point, all we knew is that he had contracted MRSA and he had pneumonia from that, and then on top of whatever at the time we thought cardiac was going on. It just, he just couldn't, his little body couldn't handle it.

And so he was extubated for about two days, laid down for a nap, Thursday, March 30th, around two o'clock. And I had left the hospital at that point to go watch my other kids school function, like a program of some kind. Yeah. And my husband was calling me saying that his stats were dropping and they couldn't get them up and that I needed to get back up there because it was getting scary. And so I dropped everything, rushed to the hospital, and at that point they were already bagging him. Wow. 

Deonna, Brooke, Rhandyl:

Yeah, cause you're saying your husband's super chill and calm, so if he's saying it's scary, you know you're heading down a bad path. It's scary. You just need to get here. Like, yeah. And you knew, because you know him. Like his tone, you were probably like, oh. That's the worst drives ever, when you think something bad's happening and you're not there. It's a bad feeling. Like flashers, just. Yeah. Oh, yeah. 100 mile an hour. Let's go. Follow me to the hospital, I don’t even care.Yes, exactly. 

Brooke:

And so it was basically respiratory code for about an hour and a half before they actually intubated him. They were just trying to get a CPAP on him and do all these different things. We had a little bit of trouble with that intensivist ever really thinking anything was fully wrong with Corben. Doctors are fun. You know, it happens. 

Deonna:

And what was his oxygen at that whole time? 

Brooke:

At that point he was like 40s to 60s. Yeah, that's like bad news. They got him intubated, sats dropped to 20s, they proned him, which is basically where they put him on his stomach it didn't help anything, so they ended up flipping him back over, but they were bagging him the whole time, and when you bag somebody for that long, it can basically pop their lung. Yeah, right. That's essentially what happened. So as they flipped him back over to his back his heart stopped, because that lung had popped and yeah too much pressure on his heart and.. So they did end up getting him back but at that point he had to go on the oscillator they were talking ECMO, they did an echo of his heart at that time as well and he had a bunch of fluid around his heart. Local cardiologists came in, the pedi trauma surgeon came in and they basically said, we're not touching this kid, y'all need to transfer him out like ASAP. 

Deonna:

Like, you can transfer a kid that's doing that bad out, like, they have to be semi stable to go out.

Brooke:

He's not stable enough, and you can't go on an oscillator. Yeah. And so they're like, we need him to tolerate a conventional vent for at least an hour before we can even talk about transferring him. And, at that point I'm like, so if something happens before he's stable enough and ready for a conventional vent, what happens? And they all just stare at me like, Hmm, like they don't know they don't have the resources and they, the trauma surgeon wouldn't even touch him or pull that fluid off his heart. 

But by the grace of God, he was on an oscillator just that night. And then that next morning they did a vent trial and he did really, really good. So Teddy Bear Transport from Cook Children's came to pick him up. 

Deonna:

I didn't know that's what it was called. That's cute. Teddy bear. 

Brooke:

So they came to get him, but I was under the impression that I could ride in the helicopter with them. I was unable to do so. Mm. But thankfully this was God too. So there was a flight from Lubbock to Dallas Love Field at 6:30 that night, so this is almost 24 hours later after he coded. departed. Cooks got there about 5. There was a flight at 6:30. Hopped on that flight, made it to Dallas. My best friend lives in Fort Worth, so she picked me up. We hauled butt to Cooks, and as we're walking on the unit, they're wheeling him in the unit. No way. Like, the timing could not have been any more perfect. 

Deonna:

So he didn't feel away from you for too long. 

Brooke:

I hope not. I, I mean, I think they just brought like some, like extra hand and maybe some extra equipment and that's why I couldn't go because you know, it's like weight based. Yeah, helicopters are different. Yeah, they are and it was fine. I understood like I wasn't mad about it. It just, I rode that 45 minute flight with my heart rate like 200 beats per minute. This neighbor's trying to talk to me and I'm just like, you're like, I cannot. Yeah, I can't talk to you about this right now.

Deonna:

I hate having to be around normal people whenever, you know, like your whole world's coming crashing down and they have no clue. It's not their fault, but you just are like, don't talk to me. 

Brooke:

We got to Cooks and we stayed for three months. When they emergently pulled that fluid off his heart when we got there, they pulled 65 milliliters.

Deonna:

So they did that again? Because they did that in Lubbock, right? Oh, they did not do it in Lubbock. 

Brooke:

They would not touch it. And that's why they were like, he could keep coding. Yeah, they did it right when he got there. Yeah. So they emergently pulled it off bedside once he got to Cook’s. Because he started having like, and this is very medical, but like the pulsus paradoxus where it's like cardiac tamponade. And which is like the worst cardiac thing that you would want at the time and it was just..

Deonna:

So he was having cardiac failure and respiratory failure at the same time? 

Brooke:

Yeah, but the diagnosis we now have which I'll touch on in a minute kind of explains all of it. Yeah. Yeah. So he, we had six total failed extubations during this time where the second they would pull the breathing tube out, he would turn white, he would foam at the mouth. Mm-hmm.  Basically just be gasping for air so they would emergently reintubate. That happened six times. 

Rhandyl:

Oh, so traumatic. 

Deonna:

And so intubation's violent too. I mean, it's not something like putting an IV in or something. It's a big deal. Yeah. 

And , when they don't have the meds in them and they're wide eyed looking at you, wide, foaming at the mouth, like, what the heck. Yeah, like, scared. And then you can't tell them it's okay, because it's not okay. Nothing is okay. Yeah, nothing's okay. All you can do is just like love on them and just talk to them through it, which I need somebody to do that to me. Yeah. Yeah. The strength that we all have to have through these things is just unmatched. I don't know how any of us have done the things that we've had to endure.

Deonna:

I don't think any of us know. 

Rhandyl:

So how? Like, how often between these extubations were they like, how long was he intubated once he got to Cooks? 

Brooke:

39 days total, I think, was the amount of days that we were with the breathing tube on a ventilator on nitric oxide the whole time. They were treating him for pulmonary hypertension. 

Deonna:

Is that a cardiac thing? 

Brooke:

No, Pulmonary hypertension. Yeah, so nitric is for pulmonary hypertension. Oh, okay. And then they had him on a medication for pulmonary hypertension as well. But pulmonology was like, it's not a lung issue. Cardiology was like, it's not a cardiology issue.

Nobody was, we had no answers at this point. His chest x rays didn't look terrible. They were like, the pneumonia's pretty much cleared up. It's a mystery. Yes, exactly. And Corben has never been black and white. There's been so much gray with all of his medical diagnoses. 

Rhandyl:

I feel ya. 

Deonna:

Yeah. They love to throw you a curveball every day.

Brooke:

So ultimately it came down to him needing a trach which Rhandyl and Deonna's girls both have. And that's what has connected me to them so intently. He no longer has a trach. We have been about a month free from his trach, and he's doing really well without it. 

And they finally did a CT of his chest and neck with contrast, and they found what's called a vascular ring. So basically, his subclavian artery, instead of being in the correct spot, it's behind his trachea, and it's wrapping around his trachea and his esophagus, and so it compresses those things. And so it kind of explains the pulmonary hypertension, him unable to get extubated because it was, I think when they would extubate, it would squeeze.

Rhandyl:

Yeah. I remember, I remember when Remi was a baby and they, there were all these unexplained reasons why she couldn't come off a vent, couldn't be extubated and why her malacia was so severe that they did multiple CTs at Houston and they would mention vascular ring, vascular ring. Yeah, and she didn't have that, but when she ended up going in for that surgery, that airway surgery, when she was two, at Boston Children's, they did end up moving  part of her aorta was actually pressing on her trachea, but it wasn’t a vascular ring. It wasn't as much as that, but they, they did move her aorta over to help prevent that pressure. So I, whenever I heard that he had this vascular ring, I'm like, Oh my gosh. Like they kept thinking that Remi had that when she was a baby, but she didn’t.

Deonna:

So yeah, I mean, that's just such a crazy difference than when I met you. We were at this doctor, what was that called? It was grand rounds or something. Yeah, like medical students. Yeah, we basically spoke about what it was like to be parents of disabled kids. And I remember meeting you and your kid had Down syndrome and that was sort of about, that was it, you know, and then when you tell me this other stuff later, it was so mind blowing to me that he was going to need a trach and just all that out of the blue, so I'm glad you have a little bit of answers now.

Brooke:

Yeah, I'm glad too. I mean, I'm actually like excited and I'm hoping that we should be going to Houston, like if they can fix this, you know, because he's, he's also been tube fed since he was seven months old because he's been unable to swallow. And if things, you know, if they fix this, it could potentially allow him to start exploring with foods and maybe talk.

Rhandyl and Deonna:

Oh my gosh. There's so much that could come from this. Yeah. That's so crazy. I didn't think about all the other things. 

Rhandyl:

So all of you guys out there like, you know, in the beginning phases of things, Corben's been I mean, he's seven and after all these doctors and hospitalizations and they just discovered something new. So there's always, you never know. You just never know. 

Brooke:

You never know. And I'm so thankful that we have now found it. I wish they would have found it sooner, but yeah, you can't go back. Right. I'm just thankful to have found it now. Now I'm just anxious to get it fixed and kind of see if it's not going to be a switch. He's not going to like wake up and talking and eating, you know, but he might not ever eat. He might not ever talk and that would still be okay, but this is a step in the right direction.

Rhandyl, Deonna, Brooke:

Oh, but if she's able to breathe and have a normal... Breathe is, I'm like, breathing is always a good thing. Yeah, you can stay good. 

And I also, I do have thoughts of like... Well, while we're at Cooks, if they would have found this, could we have fixed it and prevented getting a trach? Sure, there's always those. Oh, there's so many what ifs if you live in that place, it’s dangerous. But we all do. I still do. Yeah. Tomorrow's another day, and so yeah. I think it's gonna be good news, hopefully. 

Deonna:

Can you talk about what you felt like as far as the trauma of what you went through when he was born and the Down syndrome diagnosis versus this new stuff, did it feel very different or did it just bring back  old bad memories, or was it way worse?

Brooke:

I think very different. You know, his birth was not traumatic. Like having a kid with Down syndrome didn't feel traumatic to me. We were ready to face that. I think it's everything that has come beyond Down syndrome. And sometimes, we have had friends that have kids with Down syndrome that get leukemia because their risk is a lot higher, and…Oh, really? Yeah and that's terrible, and, but then we also have  some friends that have kids with Down syndrome who the Down syndrome doesn't really affect them at all, and they don't really have any medical diagnoses. Right. And, so, , just like your neurotypical kids, all kids are gonna develop and grow differently, and some kids are just...

Just developed differently in utero. Right. He has had this vascular ring since utero and it's just forever. Yeah 

Rhandyl:

So kind of what I see just from the outside looking in, and correct me if I'm wrong, but do you kind of view his actual down syndrome diagnosis as just a small fraction of his medical  disabilities or do you feel like it’s..?

Brooke:

yeah, no, that's, that's a valid question. I do feel like it is a small fraction. I feel like it's what initially has predisposed him to all of these things he’s experiencing now. But I’ve also seen kids with down syndrome not have any issues so.. Sure, of course.

Deonna:

And that's probably how everyone labels him, right? Like, it's the obvious, easy thing to label him that way. 

Brooke:

There's so much more beyond that people don't see and we don't share. Yeah. Yeah, I definitely think our experience this year was very traumatic. 

Deonna and Rhandyl:

It was. It was. It was traumatic for me to watch you go through, so I can't even...

Brooke:

And y'all were, yeah, like, I didn’t really even know y'all, but in that moment, I knew y'all were the two that would get it. And so like, I was texting you the whole time. And then when Corben was coding, Rhandyl was just like the first text that I clicked and I'm like, he's coding. And she just talked me through that. And she's like, is he back? Okay. Like, you know, just like those heavy conversations for anybody just to say like, is he back? Like, they get it, you know, like you got it in that moment. And, and then later I'm like, oh my gosh, I should have done that to her because that probably brought up all kinds of trauma within her and that wasn't fair.

Rhandyl

No, I, I was, you needed someone in that moment and there were times where I needed, and I didn't have a resource. Yeah. So I was, I'm happy to always be that resource for someone. For sure. 

Brooke:

Well, I've always valued y'all so much, and y'all are an inspiration to me and I'm just happy to have y'all. 

Deonna and Rhandyl:

Yeah, us, there's four of us who hang out and we all have, our kids all have trachs and we said, well, your kid doesn't have a trach anymore, so you're out of the group. Yea, you can’t hang out with us anymore..haha (laughing). 

Deonna:

Oh man, okay, if you could describe what your child has taught you about yourself through this experience, whether it's the initial diagnosis or even really just what you've been through this last year, because that's a whole lifetime in itself, I feel like… what would something like that be?

Brooke:

So it is funny that you say that because we do, when we're talking about things, we're like before Corben got sick this year, or since Corben got sick this year, and so there's like two different like worlds that…

Rhandyl and Deonna:

Versions…Trauma does that, like, those huge, there's before and after..

Brooke:

and so that's where we're at with that.. but like he's taught me more for the down syndrome and him being nonverbal is to be his voice, but he's also helped me find mine. I, I am naturally a very quiet, kept myself, like non confrontational person. I just just sweep everything under the rug and everything's good. And there are several situations, whether it be like in an ARD meeting or in the hospital where we do have to advocate for Corben and be his voice. And this is kind of funny, but like, we walk away and my husband will like, kind of like elbow bump me and be like, man, Corben changed you, like jokingly. 

Brooke, Rhandyl, and Deonna:

Mama bear came out of you. And he like acts all scared of me. I'm like, that's funny. You're like, but you should be though. I know. Watch your back. Yeah, watch your back. (Laughing) 

Brooke:

And he's also taught me, and this is cliche as well, but like how strong I really am. And most days, I do not feel strong. But looking at the things he's endured, like we've endured as a family, the emotional and mental strength during the moments (like we've all been there) it's just insurmountable, you can't even describe how strong.. and then looking back, you're like, how, how did I do that?

And there was times where, throughout this year, I couldn't cry and like in the hospital with him, I just was so numb and I just could not cry. And I think it was just like a mindset of we've got to get through this and I have to be strong for him and I know y'all feel this so vividly that you almost, and I still, I still feel numb. I still feel like I haven't processed everything that's happened this year and I, I feel like that is normal. Y'all have reassured me that that's normal and I, I will. 

Deonna:

We're dead inside. (Laughing)

Rhandyl:

You'll have your cry. It'll be in the shower or some random time. You'll hear a song or something. 

Yeah, somebody came up to me one day at a funeral. Not a random funeral, but it wasn't like, I wasn't emotional at the funeral, but someone came up to me and I knew she was genuinely like, she was asking me like, how are you? Like, after asking how Remi was, and then they were like, how are you? And, put their hand on my shoulder, and I just broke down. Like, that's the worst question. Like, how are you? And you're like, and then, yeah, you just crumble.

Brooke:

Like, do I give you the honest truth, or just tell you that I'm good? 

Rhandyl

Yeah, well, I don't know. I just, I'm like, and it was  her granddad's funeral, and I'm like, oh, I'm crying here about myself and it was so embarrassing.

Deonna:

Um, I always want to cry more than I can. I just am not a big crier and I know if I did, I would feel better, but it just does not happen for me. 

Rhandyl:

So, what resources, if any, would you recommend to a parent who's facing the same challenges? 

Brooke:

For Down syndrome specifically, the Down Syndrome Diagnosis Network- they have a lot of Facebook groups. I've gone to a couple of the in person conferences with these moms, and it's really cool, they have so many different groups- epilepsy, trach, oxygen, tube feeding, and they're smaller groups, but it is nationwide. But they do keep them smaller and you have to go through this in depth questionnaire of if your child actually does have Down syndrome. So they can't allow just anyone in there. It's very private, like closed, but you have to go to their website and fill out this thing to even be added to your birth group and you're in birth group. So he's in a 2017, he was born in December of 2016, but they put him in January of 2017 group. But those conferences are really cool. 

And then we do have a local organization, it’s called BUDS. But you also have to be careful in facebook groups too because you can get a bunch of unwanted opinions and advice. 

Deonna:

They can go negative real quick, too. Or that's how the trach mom groups can be, like, real negative. 

Brooke:

And so you have to watch out. But really just find the people who get it. Like we were just talking about you have to have people who get it. 

Brooke, Deonna, and Rhandyl:

And if you don't, you will just... Go alone. Yes. Yeah. Very much so. And there's people that think they get it, but they don’t. And it's not their fault. Because their kid got a cold once. You know, and I appreciate them trying to empathize, but you just can't get it unless your child has been through the same diagnosis or a life or death experience. Oh. 

Deonna:

Oh, I know. I have people who are like, oh, my kid broke their leg once. I know. I'm like, you do not know what this is like. Like, don't even say that. haha. I know, it's funny.

Brooke:

Yeah. So after this year as well it's hard to go through something like that and not have PTSD from it, and we all feel that. Yeah. So survival is basically on your mind constantly. There's no guarantees, and when our kids get sick, it can quickly become an emergency. Oh, yeah. Mm hmm. And you just can't let your guard down, and I'm still working on not living in that fear, but I'm also still trying to process it.

Rhandyl, Deonna, Brooke:

And, It's when you've been through a trauma like that. It's just I think…It’s a constant process. Yeah. It changes you. It really does. Oh, yeah.

One of y'all had shared Amanda Griffith Atkins Instagram and that Instagram has been.. oh I love her. So good for me to read through. Like she is not afraid to say what we're all feeling. No. Like every post I just want to share because I feel so parallel. She said she would talk to us someday and I'm like, oh what? I know. Yeah.

Brooke:

So the main the one that I have been clinging to recently and this is almost like a difficult part in having Corben it’s- “one of the most complex parts of disability parenting revolves around the fear of telling people the whole truth. We're constantly asking ourselves, can I be vulnerable and tell you the whole truth without scaring you away?”

Yeah. And with that, I don't want people to be afraid to ask me how Corben is doing, but it does get exhausting to talk about and 9/10 times, if you ask how he's doing, I'm going to say great because he is, he's thriving with what he can, and I know people are genuine, but it tends to consume me most days, and at times I feel like it's taken over my whole identity. And like I said, I love talking about him, but it's the first thing people ask, and... I'm just never going to be fully honest and tell you all the daily hard struggles we have as a household surrounding Corben but  

Rhandyl:

I mean. It's a lot if you go into the whole truth.

Brooke:

Right. And it’s people don’t know what to say and I don’t expect them to know what to say but…

Deonna:

Well and I feel like so many people are in our houses all the time that we feel like we owe everybody this big explanation for everything because they're in our house all the time and they know all these really personal things. Like me and my husband were talking yesterday about how our house doesn't feel personal to us. It's just this place where people are constantly coming in and out. It doesn't feel like it did pre- you know, her getting hurt or anything like that. We used to have privacy and all that stuff. So, I mean, yeah, I know what you're saying for sure. 

Brooke:

Well, and then like, yeah, I know y'all aren't used to this, but having, since we've been back from Cooks, having nursing staff in our home. Mm hmm. And that's another thing. 

Rhandyl, Deonna, Brooke:

Yeah, that's still fresh. You guys are still learning that whole thing. Yeah, that takes a while to get used to. It does.

Deonna:

Well, thank you so much for coming on.

Brooke:

Thank you guys so much for having me. 

Deonna:

Yeah, I remember when we met that day, it was like, oh, I want to be friends with this girl. She's nice and you know this whole thing and I was like, oh our kids both have these things going on even though they were pretty different. I mean parents of disabled kids just really we have to stick together and we relate to each other instantly in a way that is It's something I never thought I would experience on this earth, just like an instant thing.

But I had no clue at that time how your kid was going to go through a lot of the same stuff as our kids have gone through. And so it's, it's been a quick bonding, but you know, it's been good. So we're just so thankful for you coming on. 

Brooke:

Thank you guys so much for having me.