10 | Lifting Up with Down

[00:00:00] Hello. Long time no publish, I know, but I promise I did have a, at least what I consider

[00:00:06] a somewhat reasonable excuse. I had a baby. Yep, a little boy or a big boy. He was almost

[00:00:14] nine pounds born a week early. Weight, courtesy of course of gestational diabetes. Although

[00:00:20] he was thankfully smaller than his older brother who came into the world three years earlier

[00:00:25] at 10 pounds, eight ounces. So you know, almost nine pounds was kind of a win I would

[00:00:30] say. Say hello baby brother. The baby is doing well. His older brother just loves him to

[00:00:37] pieces but that's why there's been a bit of a hiatus in creating these episodes. And I

[00:00:44] mean it has made me think actually as I did have longer than usual to work on this episode

[00:00:50] As we found out that we were pregnant, we were faced with a few decisions that many

[00:00:55] of you have probably also faced during these kinds of circumstances. One of those decisions

[00:01:01] was whether or not to do genetic testing during the first trimester to see if the baby potentially

[00:01:07] had any, you know, chromosomal abnormalities specifically to see if he had Down syndrome.

[00:01:14] First up, a report in the New England Journal of Medicine could revolutionize prenatal

[00:01:18] screening for Down syndrome and other disorders. This prenatal testing is pretty common these

[00:01:23] days, especially if you're considered a high risk pregnancy as I always am because you

[00:01:28] know I wasn't able to have children until I was older than 35 which apparently makes

[00:01:33] me an old maid in terms of pregnancy. But concerning this test, there are typically

[00:01:37] two parts to it. There's a blood draw to test protein and HCG levels and then there's an

[00:01:42] ultrasound to more or less examine the size of the back of the baby's neck, which can

[00:01:47] help indicate if the baby has something like Down syndrome. Doctors in the area that I

[00:01:52] live in often recommend these tests be done and the decision to do these tests is a personal

[00:01:59] one that is made by each individual or couple. For me, I'm one of those people who likes

[00:02:05] to have as much data as possible so that it can help me know how to plan ahead. So I personally

[00:02:11] opted in to do the tests with both of my pregnancies. But honestly, the decision of whether or not

[00:02:16] to have the tests done, it's not really nearly as important as the decision that comes after

[00:02:23] the test results come in. What would I do if my pregnancy tested positive for Down syndrome

[00:02:29] or some abnormality? Would I do anything differently? In my case, the tests for both of my boys

[00:02:35] came back normal and both were born without any major chromosomal abnormalities at least

[00:02:40] as far as we know. But it's probably safe to say that anyone listening to this right now

[00:02:44] has interacted with somebody probably who was born with any of these chromosomal conditions

[00:02:51] or knows someone who has a close family member with Down syndrome. And there's no denying

[00:02:56] that those interactions are different, even memorable. But how have those interactions

[00:03:03] been memorable? How have we walked away feeling once we've spoken to someone with some kind

[00:03:08] of health or cognitive challenge? Why do we remember those interactions at all? I mean,

[00:03:14] are they really all that different? Today's story explores these questions brought to

[00:03:19] light when one family's unexpected circumstances ended up touching a community and beyond.

[00:03:26] I'm Jolie Hales, and this is Positivity.

[00:03:44] In the state of Wisconsin lives a 27-year-old man named Noah. But before we really meet

[00:03:56] Noah, his story begins with an important person in his life.

[00:04:01] My name is Kara VanVoren and I currently am a regional trainer for a suicide prevention

[00:04:07] program in high schools called Sources of Strength.

[00:04:10] A national program that focuses on preventing youth suicide.

[00:04:13] What it does is teaches people they have strength and what to do when they're not feeling so

[00:04:20] strong. What do my peers do? How can I learn from them so that I don't get stuck and be

[00:04:26] in pain or sadness?

[00:04:29] But before her days working with Sources of Strength, Kara had worked in cancer centers,

[00:04:34] also spent time working at a local children's hospital, and other days working at a parent

[00:04:39] training information center where she helped parents navigate the Wisconsin school systems.

[00:04:44] But no matter what job she had, one continuing theme stood out. Kara liked to help people.

[00:04:51] So much so that she's made a living out of it. And when Kara isn't working...

[00:04:55] I like to read. You know, I'm usually in a Bible study at church. I'm kind of a crafty

[00:04:59] person so my friends will call and say, hey we're working on this project, do you want

[00:05:03] to come over? Yep. You know, I like to walk, listen to music. I've been on the worship

[00:05:08] team at church.

[00:05:09] And her biggest hobby, you might say, is being a mom.

[00:05:12] A lot of my hobbies I think revolve around what my kids are still doing.

[00:05:17] Kara is the mother of three kids, two girls and a boy, who are all grown adults now. But

[00:05:22] it did take a couple decades of blood, sweat and tears, hugs, and all those things that

[00:05:27] parents do to get them to that point. But before that, there was actually a time when

[00:05:32] Kara and her husband Todd thought that maybe they wouldn't be able to have any kids at

[00:05:36] all.

[00:05:37] We tried to have children for seven years. They could never have children.

[00:05:40] That's Todd. After years of being married, while Kara was working in radiation therapy

[00:05:45] at a cancer center and her husband worked in the auto glass business in a small town

[00:05:49] in New York State, Kara hadn't gotten pregnant and the doctors were starting to hint that

[00:05:55] children might not be in their forecast. Which was a bit of an emotional blow since Kara

[00:06:01] had always pictured herself as being a mother. And now she might have to face a totally different

[00:06:06] future for herself than what she had always envisioned.

[00:06:09] But when she turned 29, after consulting with the right doctor who simply prescribed

[00:06:14] her a certain medication, she was elated to find out that against all earlier odds, she

[00:06:19] was in fact pregnant.

[00:06:22] And throughout her pregnancy, everything looked good. Both she and her baby were progressing

[00:06:26] well with all signs pointing to the upcoming birth of a very healthy boy.

[00:06:31] They asked us if we wanted to do any of the prenatal testing and we said no because it

[00:06:35] didn't matter to us. If there was something we needed to know to have the right people

[00:06:40] in the delivery room, if there were respiratory or spina bifida, things like that, we would

[00:06:45] have known. We could have seen and told that through the ultrasound.

[00:06:48] So they decided to opt out of prenatal testing and instead just keep an eye on ultrasounds

[00:06:53] as the pregnancy progressed. And to their delight, all the ultrasounds were thankfully normal.

[00:06:59] Soon, Kara gave birth to a beautiful baby boy. They named him Noah, inspired by Noah

[00:07:05] in the Bible, a man of faith, Kara says, who was chosen by God just as they felt their

[00:07:10] little baby was chosen for them.

[00:07:12] He's such a good boy. He slept the night before, all the way through the night before

[00:07:15] my first day of work. I was so happy.

[00:07:18] Kara took six weeks of maternity leave before she had to go back to work at the cancer center.

[00:07:22] The daycare was right next to my office and so I could leave my building at lunch, go

[00:07:27] see him, come back.

[00:07:28] Because you know, at the end of the day, there's not a lot of time.

[00:07:30] And so he was spending all his time, all his great wake up time with all these other people.

[00:07:34] And I wanted some too.

[00:07:36] When Noah was about 10 weeks old on a Friday evening, Kara went to pick him up from the

[00:07:41] daycare where she was met with some unexpected news.

[00:07:45] They said, Kara, we had a case of meningitis in the daycare, not in the infant room, but

[00:07:51] just to let you know it was in the building.

[00:07:54] And we were like, OK, what does that?

[00:07:55] I don't even know what that means for us, really.

[00:07:57] Meningitis can be especially scary for young babies because their immune systems aren't

[00:08:02] developed well enough to fight off infection.

[00:08:05] So Kara and Todd hoped their little guy had come away uninfected.

[00:08:08] But we got home and around 10 o'clock at night, Noah spiked a fever.

[00:08:12] And I didn't know if it was an ear infection or meningitis.

[00:08:15] Like it could have been anything.

[00:08:17] So we took him in and they said the only way to rule out meningitis was to do a spinal

[00:08:22] tap. In case you're not familiar, a spinal tap is when a needle is inserted into the

[00:08:26] space between the vertebrae in the lower back in order to remove a sample of fluid

[00:08:31] that surrounds the spinal cord in the brain, which is then used to diagnose certain

[00:08:35] serious infections like meningitis or other problems with the central nervous system.

[00:08:40] Needless to say, the procedure is not fun for anyone, let alone a newborn baby who

[00:08:46] doesn't understand his surroundings yet.

[00:08:48] So they did a spinal tap on my sweet little boy.

[00:08:52] And when they brought him back to me, it must have been really horrible for him because he

[00:08:57] was crying. He was all red and the poor thing.

[00:09:01] So Kara just held him close, comforting the distressed little infant.

[00:09:06] I mean, at least the worst part was over for the little guy and they could soon go back

[00:09:09] home and then just wait for the meningitis test results to come back.

[00:09:14] But then unexpectedly, one of the nurses came back into the room saying that the

[00:09:19] hospital wasn't quite done with them yet.

[00:09:22] The nurse said, I may need to do a little more blood work.

[00:09:25] And I said, oh, no, no.

[00:09:27] You did blood work before he went in for his spinal tap.

[00:09:30] You did a spinal tap. He's done for the day like this.

[00:09:32] Can it wait till tomorrow? What are you drawing?

[00:09:35] Kara could tell that this nurse didn't realize that Kara worked at that same hospital she

[00:09:39] did and that Kara understood blood draws and medical testing more than like the average

[00:09:44] person off the street.

[00:09:46] And when Kara asked the nurse what the blood draw was for, the nurse didn't have an answer

[00:09:50] for her. She said, well, I'm not really sure.

[00:09:54] Then don't come back till you are because you're not going to poke my kid if you don't

[00:09:58] even know what you're doing.

[00:09:59] And so the lab tech comes in and she said, oh, I'm here to draw some blood from Noah.

[00:10:03] I'm like, exactly what are you drawing?

[00:10:05] And she's like, I don't know.

[00:10:07] I said, I know for a fact you do, because what color tube are you going to put it in?

[00:10:11] They didn't want to tell us.

[00:10:12] So that was a big, big, big fiasco.

[00:10:15] And I looked across the room at Todd and I said, something's going on.

[00:10:19] This is not normal.

[00:10:20] It was strange enough to Kara that the extra blood draw was being ordered, let alone the

[00:10:24] fact that no one would tell her why.

[00:10:27] Were they not there to check for meningitis, which would have been accomplished with that

[00:10:31] spinal tap they had just done?

[00:10:33] By that point, the doctor had gone home for the night and wasn't available to provide

[00:10:37] clarification. So when it became clear to the medical staff that Kara wasn't going to

[00:10:42] allow another blood draw without a clear stated purpose, they agreed to let Kara, Todd

[00:10:47] and 10 week old Noah go home with the expectation that the doctor would call them in

[00:10:51] the next day or so. And when the doctor did call, they indeed got clarification.

[00:10:57] The doctor who had been seeing Noah regularly since he was born talked about what had

[00:11:03] happened when they had performed the spinal tap.

[00:11:05] She said when Noah was in his spinal tap, he was crying so hard that one of the nurses

[00:11:10] just took a quick look at him and said, I know Noah.

[00:11:13] Kara brings him in here to visit a lot.

[00:11:15] Like, but does he have Down syndrome?

[00:11:20] And the doctor said, what?

[00:11:22] And then they looked at him and said, oh, he's got slanted eyes.

[00:11:25] And they looked at his palms of his hands.

[00:11:27] Apparently those with Down syndrome often only have one crease in the palm of their

[00:11:32] hands instead of the two or three that most people have.

[00:11:34] And she said, well, just look at his face when he's crying.

[00:11:36] He kind of looks like he has Down syndrome.

[00:11:39] And she said, no, no, no, because this was one of a group of five pediatricians saw

[00:11:43] him and she was one of them.

[00:11:45] So she had given him a shot or seen him for something.

[00:11:47] She's like, oh. But then they thought she had someone to call me.

[00:11:50] She said, we're just going to rule it out.

[00:11:51] We're just going to get it out of our minds and be done with it.

[00:11:53] I'm sure he doesn't have it.

[00:11:54] He didn't have any other signs.

[00:11:56] He was developmentally so on track.

[00:11:59] Down syndrome.

[00:12:01] How could her little boy have Down syndrome?

[00:12:04] He was almost three months old.

[00:12:06] Wouldn't there have been some clear indication if he did, in fact, have such a

[00:12:09] condition? I mean, after all, almost all cases of Down syndrome are identified

[00:12:13] either before or at the time of birth, not 10 weeks later.

[00:12:18] Down syndrome is one of the most common chromosomal disorders out there, with

[00:12:22] around six million cases worldwide and around 200,000 cases in the United States

[00:12:28] in 2022.

[00:12:30] Because of how common it is, most people are familiar with Down syndrome in one

[00:12:35] way or another. But in case your interactions have been limited, Down syndrome

[00:12:40] is a genetic disorder that occurs when a cell divides abnormally and causes a baby

[00:12:44] to be born with an extra chromosome, resulting in lifelong intellectual

[00:12:48] disabilities and developmental delays, as well as physical health abnormalities

[00:12:53] like heart or gastrointestinal problems.

[00:12:56] The intensity level of symptoms does vary across individuals, and those symptoms

[00:13:01] can be mild.

[00:13:02] They can be severe or they can be somewhere in between.

[00:13:05] And there is no known cure for the condition.

[00:13:08] You're either born with it or you're not.

[00:13:10] Physical symptoms can also include having a smaller head or a flatter face,

[00:13:15] shorter neck, slanted eyes, small ears, short fingers, small hands and feet,

[00:13:21] short height and the single crease, as we mentioned earlier, in the palm of their

[00:13:25] hands, which nurses noticed on Noah when he was brought in to test for

[00:13:29] meningitis. And again, Noah was already 10 weeks old.

[00:13:34] If he truly had Down syndrome, it seemed logical that at least some of these

[00:13:39] physical symptoms would have been more evident beforehand.

[00:13:42] And I should take a moment to say it is indisputable that raising a child with

[00:13:46] Down syndrome comes with challenges, even significant challenges in many cases.

[00:13:52] And with the availability of modern prenatal testing at the end of a first

[00:13:55] trimester that catches more than 99 percent of cases before birth, today,

[00:14:01] around 67 percent of all pregnancies in the United States with a Down syndrome

[00:14:06] diagnosis are terminated, leaving only a third of these pregnancies to continue

[00:14:11] to birth. For Kara and Todd, they opted out of prenatal testing because in their

[00:14:17] minds, they would have continued to a live birth regardless and the test results

[00:14:21] wouldn't have changed how they would have moved forward.

[00:14:24] Still, 10 weeks after Noah was born, it seemed they didn't have to worry anymore

[00:14:29] about chromosomal abnormalities.

[00:14:31] They hadn't had any idea up until this point that anything could possibly be

[00:14:35] abnormal. But now Kara and Todd knew why the medical team had wanted to do extra

[00:14:40] blood work. And now that they had a reason, Kara and Todd consented to the

[00:14:45] additional tests. If anything, it was best to rule out Down syndrome quickly so

[00:14:50] they could continue on with their lives because it would be ruled out, wouldn't

[00:14:54] it? So you're thinking you have a child that is perfectly healthy, has no

[00:14:58] complications at all to now.

[00:15:00] So what's going through your head and you're a thousand miles away from home

[00:15:03] from everybody, just the two of us.

[00:15:06] You talk about faith there.

[00:15:07] So they went ahead with the blood work and at the same time received word that

[00:15:11] Noah did not have meningitis.

[00:15:14] And while that was a bit of a relief, there were some bigger questions now

[00:15:17] looming overhead.

[00:15:18] Every minute of that time is just like anything now, like waiting to find out if

[00:15:23] I had cancer, waiting to find out if he had Down syndrome.

[00:15:26] The waiting is always the worst part, right?

[00:15:28] Once we know what we've got, we can make a plan and we can move forward.

[00:15:31] But in that middle time is so hard, so hard for me.

[00:15:35] And I would go bounce back and forth between yes, he does.

[00:15:38] No, he doesn't. How could he?

[00:15:40] Kara and Todd waited on edge for nearly two weeks.

[00:15:44] Then a day before Noah's regularly scheduled checkup, the doctor called Kara.

[00:15:49] It was a Thursday afternoon and Kara was working at the cancer center where she

[00:15:53] stepped into her office to take the call.

[00:15:55] He said, Kara, I can't believe I'm making this call, but Noah has Down

[00:15:59] syndrome. His test came back positive.

[00:16:08] And I said, OK.

[00:16:10] Kara worked in a cancer center.

[00:16:11] She was familiar with holding a professional demeanor and challenging even

[00:16:15] emotional situations.

[00:16:17] But this was her own sweet little baby boy they were talking about.

[00:16:21] She continued to listen to the doctor's words.

[00:16:24] And he said, now I'm going to see you in the office tomorrow.

[00:16:26] But I just didn't want you to have to wait and wonder anymore.

[00:16:30] So I'm calling you today.

[00:16:32] Kara thanked the doctor for the call, even though deep down inside, she wasn't

[00:16:36] sure that she really appreciated getting the news by phone that day at all.

[00:16:40] I don't think I really did.

[00:16:42] But now I do because I would have missed out on this next moment.

[00:16:46] The memories of the next moments stand out vividly in Kara's mind.

[00:16:51] She remembers the jacket she was wearing.

[00:16:53] She remembers the exact path she walked out of the building and who she spoke to

[00:16:57] along the way as she shared that she would be leaving early for the day and

[00:17:01] wouldn't be back. And they all knew what was in the works and were reassuring

[00:17:07] and trying to calm us the whole time.

[00:17:08] They wouldn't have believed it either.

[00:17:10] She walked out the back door and got into her blue Toyota 4Runner, put the key

[00:17:14] in the ignition and began the 50 minute drive to her husband Todd's work.

[00:17:19] I probably should not have been on the highway that day because I really don't

[00:17:22] remember the drive.

[00:17:23] She just remembers her body going on autopilot while her mind sat focused on

[00:17:28] not just what this meant for the future of her family, but why.

[00:17:32] She had always been a faithful churchgoing person who tried to do what was

[00:17:36] right in the eyes of God.

[00:17:38] And now God was allowing this to fall on her and her innocent little child.

[00:17:42] I remember crying, saying, what are you thinking?

[00:17:46] We waited forever for this kid.

[00:17:47] I was I was yelling at God.

[00:17:49] I was mad. I was mad at myself because I work in a medical clinic.

[00:17:53] I see kids and people all the time.

[00:17:55] I didn't even know my own kid had Down syndrome.

[00:17:57] What is wrong with me?

[00:17:58] What kind of mom am I if I can look him in the eye every day, every night, feed

[00:18:03] him? I didn't know.

[00:18:06] What kind of mom doesn't know her kid?

[00:18:11] Forty five minutes went by on the road with Kara wiping back constant tears,

[00:18:15] pushing forward to her destination in anger and sadness.

[00:18:20] As she began to exit the highway, she felt her mind pause for a moment.

[00:18:25] And I hear this voice and it's not like I heard it like you and me talking, but

[00:18:30] it was inside of me.

[00:18:31] And it said, well, what's wrong with you?

[00:18:36] He's the same little boy you dropped off at daycare this morning.

[00:18:39] He's the same little boy you take to the Buffalo Airport, fly through Detroit to

[00:18:42] get to Green Bay so that you could spend long weekends with your mom and dad and

[00:18:47] his grandparents, both sets of grandparents.

[00:18:49] You're so proud of him.

[00:18:51] You waited so long for him.

[00:18:52] He didn't change today, honey.

[00:18:53] You did. So sweet girl, you got to get over this.

[00:18:58] This is not a him thing. It's a you thing.

[00:19:00] And that voice was right.

[00:19:04] Kara pulled up to Todd's auto glass shop where Todd was working on a car.

[00:19:08] Todd looked up and saw her walking in.

[00:19:09] And just as he began to ask why she was there, he stopped.

[00:19:14] He knew. He flipped over a five gallon bucket, sat on it and tears began

[00:19:20] streaming down his face.

[00:19:21] And said, why us? Why me?

[00:19:23] Why our little boy?

[00:19:25] I said, I'm not sure.

[00:19:27] But this is what I just heard.

[00:19:29] And I think that we have everything we need if we just listen.

[00:19:37] Keep listening to that voice.

[00:19:39] And he said, OK.

[00:19:40] And we just decided right then and there that Noah was going to be Noah with

[00:19:45] or without us. And we also know after a few years that there's no way in any

[00:19:53] universe that Noah needed us as parents, but that we needed him.

[00:20:00] And from that day, that attitude has been paramount to Kara and Todd's

[00:20:04] approach.

[00:20:05] And we couldn't do it without the Holy Spirit stopping in my van that day.

[00:20:11] And I'm not a person who hears God's voice, but I do know when he speaks, he

[00:20:15] comes alongside and speaks quietly.

[00:20:18] It's not always in the fire.

[00:20:19] And now more than ever, she and Todd would welcome any offered divine guidance

[00:20:24] as neither of them had any real experience with anyone who had a cognitive

[00:20:28] disability. Kara had seven brothers and sisters who all had kids before she

[00:20:32] did. And none of them were born with any such condition.

[00:20:35] We looked at each other and like we said, God put up here on earth for some

[00:20:39] reason and gave it to us.

[00:20:41] So so we put our right foot in front of our left.

[00:20:45] So Kara and Todd started doing some reading, determined to figure this out.

[00:20:50] And at the same time, Kara opted not to go to support groups or even meet with

[00:20:55] people who had children with Down syndrome, not because they didn't have value

[00:20:59] to add, but because Kara felt like there wasn't a one size fits all approach to

[00:21:04] raising Noah and that maybe the best way to raise him would be to read and learn

[00:21:09] all she could and then take a custom approach day by day according to what felt

[00:21:14] right for her child.

[00:21:15] So as soon as he gets a diagnosis like that, all these professionals swarm you.

[00:21:19] They went to an early intervention program that taught them how to work with

[00:21:22] children who weren't hitting typical milestones.

[00:21:24] The people we had in New York came actually came into our home and they were

[00:21:28] so supportive and so supportive.

[00:21:30] They came into our home and we will never forget them.

[00:21:34] They taught us so much about positive parenting and how to do things to help

[00:21:40] your kids.

[00:21:41] For instance, it soon became apparent that one symptom of Down syndrome that

[00:21:45] showed in Noah was in his low muscle tone.

[00:21:48] So professionals taught Kara and Todd how to help baby Noah build up enough core

[00:21:53] muscle strength to be able to sit up in a high chair.

[00:21:55] Noah's mom, Dr.

[00:21:56] Kari, was also a doctor and she was able to help Noah with other tests to

[00:22:00] determine what other health risks he had.

[00:22:02] Many children born with Down syndrome have to undergo multiple surgeries to fix

[00:22:06] their hearts or their valves.

[00:22:08] But for Noah, it appears that he had been blessed with a very healthy heart.

[00:22:12] Sometimes people with Down syndrome have a thing in their neck where the

[00:22:17] vertebrae allow you to slide forward or backwards and it can suffocate you.

[00:22:21] If he would have tipped his head forward and that would have slipped and he

[00:22:24] could have died in the backseat.

[00:22:27] Thankfully, Noah didn't have that condition either.

[00:22:29] We had occupational therapy and physical therapy who came into our house

[00:22:33] sometimes twice a week for 15, 20, 30 minutes.

[00:22:36] They would bring all kinds of fancy toys and see what he could do and leave him

[00:22:40] there for a week for him to develop different skills.

[00:22:42] But not every professional they spoke to offered words of hope.

[00:22:45] In fact, on a wintry New York day soon after Noah's diagnosis first came back,

[00:22:51] Kara and Todd were at the hospital for Noah's exam and necessary shots.

[00:22:55] And while Kara redressed Noah in his snowsuit at the exam table, the doctor

[00:23:00] sat on the other side of the room talking to Todd.

[00:23:03] As Kara pulled the snowsuit over the little baby's arms, she caught a glance

[00:23:07] of her husband across the room.

[00:23:09] Todd is wide eyed because he's telling him all the things Noah isn't going to do.

[00:23:13] Things like he'll probably walk, but it'll take a long time and it won't go well

[00:23:18] because of his low muscle tone.

[00:23:20] And there's only about a 50 percent chance he'll ever be potty trained.

[00:23:23] And learning in school, that's going to be rough.

[00:23:25] People with Down syndrome usually don't eat or sleep, drink.

[00:23:28] You know, they struggle with doing things.

[00:23:30] He was like sick to his stomach listening to this list.

[00:23:32] Kara finished zipping up Noah's snowsuit and buckled him into the baby carrier,

[00:23:37] then walked over to the two men and handed the baby carrier to Todd, looking

[00:23:41] the doctor directly in the eye.

[00:23:43] And he said, you know what?

[00:23:44] You're right.

[00:23:45] There are probably going to be some things Noah doesn't do.

[00:23:47] But I can guarantee you one thing he's not going to do.

[00:23:50] And he's like, what?

[00:23:51] I said, come here.

[00:23:52] He is never going to see you again, because if you don't look for what's

[00:23:56] positive for him, if you don't see the what he can do, then he doesn't belong

[00:24:00] here and neither do we.

[00:24:02] And we switched doctors the next week.

[00:24:05] That was my first time of feeling that just like, you don't know.

[00:24:11] And you're trying to set us up for failure.

[00:24:14] Like Todd was crying when he walked out the door.

[00:24:16] Kara, what are we?

[00:24:18] What have we gotten ourselves into?

[00:24:19] How are we going to do this?

[00:24:20] Are we going to have enough money?

[00:24:22] Are we going to have enough time and resources?

[00:24:24] Like we can't have any other kids.

[00:24:26] Todd just felt our whole life go like this.

[00:24:29] I'm one man's prediction.

[00:24:33] And early on, Kara and Todd decided how they would raise Noah.

[00:24:37] While they knew he had Down syndrome and that it would come with challenges,

[00:24:41] they weren't going to let that predefine their child.

[00:24:44] They would rather see him do what he could do and then step in to help when

[00:24:48] he couldn't do something and keep it as simple as that.

[00:24:51] And their family continued to grow.

[00:24:53] Two years after Noah was born, Kara gave birth to a little baby girl, Jill.

[00:24:58] And then three more years after that, they welcomed another baby

[00:25:01] girl into the family, Jana.

[00:25:04] And it may surprise some people to learn that they raised all three

[00:25:07] kids with the same approach.

[00:25:09] Step in and help when they needed it and let them do what they could on their own.

[00:25:14] They didn't even mention to the girls that Noah had a medical condition

[00:25:17] that made him different in any way.

[00:25:19] They just lived their lives, giving loving support to each child as it was

[00:25:23] needed and focusing on empowering all three of their children to be their best

[00:25:27] selves. I mean, sure, sometimes that meant giving Noah special attention or

[00:25:32] support, but they never assumed that he wasn't capable of something right off

[00:25:36] the bat just because he had Down syndrome.

[00:25:39] I didn't realize until I became an adult that my life was different than

[00:25:43] anybody else's.

[00:25:45] That's Jill, Noah's younger sister by exactly two years and one day.

[00:25:49] Growing up was not any different than I think anyone else's was.

[00:25:53] Like, I never really felt like I was different because of him.

[00:25:58] I just thought everything was normal.

[00:25:59] I treat him like a brother.

[00:26:00] He treats me like a sister.

[00:26:02] And that's Jana, the youngest of the three siblings.

[00:26:05] In fact, Kara and Todd were so unfocused on announcing Noah's Down syndrome

[00:26:10] that their second born, Jill, was completely oblivious to the fact that Noah had

[00:26:15] any condition at all for a good portion of her childhood.

[00:26:19] It wasn't until second grade when Jill was seven or eight years old that Kara

[00:26:24] noticed something was on Jill's mind.

[00:26:26] I picked her up from school. She was really quiet in the van.

[00:26:28] She's not a quiet girl.

[00:26:29] And I kept saying, Jilly, what happened?

[00:26:31] What's wrong? What's going on?

[00:26:32] And she's like, nothing, nothing.

[00:26:34] Noah was also in the car at the time and Jill didn't want to say anything in

[00:26:38] front of her brother.

[00:26:39] So once they got home and Noah went into a different room, Jill was able to open

[00:26:44] up.

[00:26:44] She comes in, she takes her backpack, swings it around her shoulder, slams it on

[00:26:49] the counter, puts her hands on her hips.

[00:26:51] And I know where she got this posture from.

[00:26:54] And she said, Mom, did you know Noah has Down syndrome?

[00:27:00] It kind of caught me off guard.

[00:27:01] I was like, yeah.

[00:27:04] And she said, is it like our family secret?

[00:27:07] And I said, honey, I don't know what you're talking about.

[00:27:09] And she said, Mom, today I wanted help in math and I was having trouble.

[00:27:14] So I said, I need Mrs.

[00:27:16] Wenzel to come help me with my math.

[00:27:18] And they said, Jill, you can't have Mrs.

[00:27:21] Wenzel come help you.

[00:27:22] What are you talking about?

[00:27:23] She goes, well, she helps Noah with his math.

[00:27:25] Why can't she help me with my math?

[00:27:27] And they said, oh, well, Mrs.

[00:27:29] Wenzel helps all the kids who have Down syndrome.

[00:27:32] And she's a helper to all of those kids, but not to you.

[00:27:37] And Jill's like, what do you mean?

[00:27:38] And they're like, well, Noah has Down syndrome, so there's an extra helper in

[00:27:41] the class for him. And she thought about this all the rest of the day.

[00:27:45] She didn't know.

[00:27:45] I just remember coming home and being like, well, what the heck?

[00:27:48] Like, why was this such a big secret?

[00:27:50] So Cara and Todd filled Jill in for the first time about Noah's Down syndrome.

[00:27:55] And that night we went to bed like we are either the best parents in the world or

[00:27:58] the worst parents in the world.

[00:28:01] And as Jill grew up, she came to really appreciate her parents approach.

[00:28:05] My parents very much raised me to treat others like all the same.

[00:28:09] It's the person that matters, not their diagnoses or their disability or

[00:28:14] anything like that. It was just who they are as a person.

[00:28:17] It really was a sign to us that we had done very well at not saying, oh, you

[00:28:22] got to help him with that because he has Down syndrome, the Down syndrome.

[00:28:25] Or, you know, Noah can't do that because he has the Down syndrome.

[00:28:28] We just made him do what he could do and we helped him do what he couldn't.

[00:28:31] We treated her the same way.

[00:28:32] Do what you can do and we'll help you with what you can't.

[00:28:34] She just made us feel like we were always like a kid to her, too.

[00:28:38] Like we didn't feel any different because we had a brother with a disability.

[00:28:42] And I've got to say that this approach was so much a part of Cara and Todd that

[00:28:47] it came across constantly as I spoke to them for this story.

[00:28:51] Naively, I'll admit, I had assumed that I would be interviewing a family about

[00:28:56] what it was like to raise someone who had Down syndrome.

[00:28:59] Like, what were the challenges?

[00:29:00] What were the heartbreaks?

[00:29:01] What were the triumphs?

[00:29:03] Everything that made life different when compared to raising children without

[00:29:06] similar conditions.

[00:29:08] But as I spoke to their family and I asked them these kinds of questions, I found

[00:29:13] that just about every time they didn't know how to answer them, they would pause

[00:29:18] and think for a long time, like almost puzzled.

[00:29:22] How was raising Noah different than expected?

[00:29:28] I don't know.

[00:29:30] It's a tough one, you know, because he...

[00:29:33] And after a while of talking to their family, I realized that it wasn't that they

[00:29:38] didn't want to tell me how raising Noah was different, but they genuinely didn't

[00:29:42] know how to respond because they authentically thought of Noah as simply being

[00:29:47] just another loved family member.

[00:29:49] Right? Not being someone who needed to be raised all that differently at all.

[00:29:55] And for me, who is admittedly completely ignorant in this area and who has not

[00:30:00] spent a lot of time around people with Down syndrome, that kind of blew my mind

[00:30:05] in a good way.

[00:30:07] I mean, it was a big lesson to me, to be honest, an eye opener and probably a

[00:30:11] necessary correction to my method of thinking.

[00:30:14] I mean, I had always assumed that if I had ever been told that I would give birth to

[00:30:19] a child with Down syndrome, I too would have moved forward with the birth.

[00:30:23] I've decided that, albeit I would be absolutely terrified.

[00:30:28] But I feel like I probably would have approached raising my child much more, I

[00:30:32] guess you could say clinically, like establishing that this wasn't just my child,

[00:30:37] but this was my child with Down syndrome and as such would need to be treated in

[00:30:41] maybe A, B and C different ways.

[00:30:44] I mean, it is hard to say exactly what I do without actually being there.

[00:30:49] But I wonder if I would really be setting up my child for the greatest success with

[00:30:54] that kind of mindset.

[00:30:56] And here I was instead talking to a family who decided that a genetic abnormality

[00:31:01] didn't need to dictate how they raised their child.

[00:31:04] Other people noticed Kara and Todd's parenting style as well.

[00:31:07] One day, Noah's pediatrician, who knew Kara pretty well from working at the same

[00:31:11] hospital, approached her.

[00:31:13] He said to me one day, you know, Kara, I just I've been thinking about this last

[00:31:17] couple of times you came in and I feel like we have the relationship.

[00:31:19] I can ask you this.

[00:31:20] Do you have different expectations for Noah than you do for the girls?

[00:31:25] I really didn't give it much thought up to that point, you know, I was kind of like,

[00:31:28] do I? I said, I don't know.

[00:31:32] Give me some time to think about it because I haven't really thought about it.

[00:31:34] And then I came home and I like throughout the weeks, I would be like, what's he mean?

[00:31:40] Like because all I really want, probably all you really want for your baby is to be

[00:31:44] healthy. As much happiness and joy as they can get to have friends,

[00:31:50] people who love them, just do what they want to do that's safe and

[00:31:55] make sense. Grow, learn like, no, I didn't have different expectations for him.

[00:32:01] We didn't.

[00:32:02] Even if his Down syndrome caused him to hit milestones a little later than other

[00:32:06] children, Noah's parents continued to encourage him to hit those milestones just

[00:32:11] as they did with their other children.

[00:32:12] He walked when he was about 20 months old, pretty solid on his own.

[00:32:17] The average child without Down syndrome typically walks around the 13 month mark,

[00:32:22] while the average child with Down syndrome typically walks around the 24 month

[00:32:26] mark, with some walking closer to even four years old.

[00:32:29] He walked earlier than I think some kids do because his muscle tone wasn't that bad.

[00:32:33] And as for talking?

[00:32:34] I feel like he's always been making noise.

[00:32:38] First words probably that I remember are what he was close to do with Jill.

[00:32:42] He would sit by her swing and try to share his toys with her and talk to her and

[00:32:47] call her baby.

[00:32:48] When Noah turned five, the age that most kids go to kindergarten, the family had

[00:32:53] moved back to Kara's hometown in Wisconsin.

[00:32:56] I think when we moved in, we added five to the population sign, you know, like 521

[00:32:59] people or something.

[00:33:00] And Kara went to the local school to enroll Noah in kindergarten with the other

[00:33:04] five-year-olds.

[00:33:05] They said, no, nobody with a disability goes to kindergarten when they're five.

[00:33:10] They stay in early childhood until they're six, separated from their peers.

[00:33:13] Not only would he have to wait to go to school, but his classes would keep him

[00:33:17] separated from kids who didn't have a disability.

[00:33:21] And for Kara and Todd, that wasn't going to work for them.

[00:33:24] From their perspective, how was Noah supposed to grow up in a normal society if he

[00:33:29] was separated from it at an early age?

[00:33:31] That's not how it's going to work because Noah learns so much from other people.

[00:33:36] Then he, you know, sitting at a desk next to him, having him trace his letters.

[00:33:40] That was boring.

[00:33:41] He is watching what everybody else is doing, good and bad, and learning.

[00:33:45] And that's what he does.

[00:33:47] Kara couldn't help but think back to when she was growing up.

[00:33:50] My husband and I, when we grew up all those years ago, kids in special education

[00:33:55] were in another part of our school.

[00:33:57] And sadly, the only time we ever saw them was when they escaped from where they

[00:34:02] were supposed to be and were running down the hallway and people were trying to

[00:34:05] catch them.

[00:34:07] Having that vision in the back of my mind moved into my heart when I met my own

[00:34:12] kid. No.

[00:34:16] They also thought of Noah's little sisters and what it would mean to see their

[00:34:20] brother separated from them like he didn't belong.

[00:34:23] And it just wasn't what they wanted for their family.

[00:34:27] So they packed up their household again and they moved to the Fox Valley, about 20

[00:34:32] minutes away from Green Bay in Wisconsin, where they found a school that would

[00:34:35] allow Noah to attend with peers of his own age, with or without a disability.

[00:34:41] Very, very loving people and a lot of support here.

[00:34:44] And while Noah was still young, they enrolled him in sports like t-ball, often

[00:34:48] volunteering to coach the teams, both to help Noah and to put other parents' minds

[00:34:52] at ease. I think having a kid like Noah scares some people, makes them

[00:34:56] uncomfortable because they just don't know what he's going to do.

[00:34:59] You know, they don't know if he's unpredictable.

[00:35:01] But as Noah got older, he had trouble keeping up with his peers' athleticism and

[00:35:05] then he ended up kind of losing interest in playing most sports.

[00:35:10] And while his health was generally good, having Down syndrome did bring physical

[00:35:14] challenges to his childhood.

[00:35:16] For one, since those with Down syndrome often have especially small ear canals,

[00:35:22] they can be prone to congestion and ear infections during childhood and they need

[00:35:26] tubes put in. On one occasion when Noah was around six years old, when the

[00:35:31] doctors went to insert ear tubes, they found a large benign tumor that needed to

[00:35:36] be removed, which involved sending him to a larger hospital to stay overnight.

[00:35:41] And that didn't just happen once.

[00:35:42] It happened seven times.

[00:35:44] He's deaf and pretty much deaf in one ear.

[00:35:46] He has no eardrum left anymore.

[00:35:48] On another occasion, when Noah was in third or fourth grade, Noah was at home

[00:35:52] sitting on a bar stool when he looked at his mom who was standing on the other side

[00:35:56] of the counter. He said, Mom, do you see these bugs in my arm?

[00:36:01] And I thought he wasn't understanding what he was saying because that didn't make any

[00:36:04] sense to me. I'm like, I don't know what you're talking about.

[00:36:06] Mom, look, look, there's bugs in here.

[00:36:10] Kara was confused.

[00:36:12] Bugs in his arm?

[00:36:14] She didn't see anything out of the ordinary on Noah's arms.

[00:36:17] But something was obviously bothering him.

[00:36:19] So Kara took him to the doctor and they did an MRI to discover that Noah had a

[00:36:24] hereditary condition called Chiari Malformation, which is apparently something that

[00:36:28] many adults walking around have without symptoms like Kara herself, in fact.

[00:36:33] And that's when the base of your brain goes down the hole in your skull that your

[00:36:38] spinal cord goes through.

[00:36:39] And it just kind of puts pressure on your spinal cord.

[00:36:42] And in Noah's case, it was causing symptoms.

[00:36:44] So they had to take a piece of the skull out in the back and they put in a real

[00:36:50] cartilage patch so that it's got some flexibility and it can move right there.

[00:36:55] And then your spinal cord goes down and doesn't have that pressure.

[00:36:57] So it was another medical procedure for Noah to ensure that he didn't lose

[00:37:01] functionality of his arm.

[00:37:03] And with every challenge that demanded the attention of his parents, Noah's little

[00:37:07] sisters took things in stride.

[00:37:09] So if Noah was hospitalized, they would go with the flow.

[00:37:12] Whoever showed up at our house to take care of him in an emergency, they were kind

[00:37:17] and understanding.

[00:37:19] Their lotto at night's mom didn't come home.

[00:37:21] And they were also very good about that, even though I think there were times they

[00:37:28] wished it were different.

[00:37:29] Noah is probably my best friend.

[00:37:32] That's Jilligan, Noah's younger sister.

[00:37:35] He is always such a positive.

[00:37:38] Well, I should say he's always such a positive person.

[00:37:41] He has just taught me what unconditional love is and what it means to be loved and

[00:37:48] love others. And he doesn't do it to make other people like him.

[00:37:51] He is just a lovable person and he radiates that to everybody else.

[00:37:56] And growing up with Noah was an amazing experience.

[00:38:00] But I didn't have to take Jill's word for it.

[00:38:02] I got the chance to hear from Noah myself.

[00:38:05] It is well with my soul.

[00:38:13] And you're just...

[00:38:14] It's my underwater.

[00:38:20] That's your underwater singing?

[00:38:23] Yeah.

[00:38:24] And in my conversation with him, it was clear that there was something that stood out

[00:38:29] about Noah.

[00:38:30] While the rest of us are worried about, I don't know, how much money is sitting in

[00:38:34] our bank account or when we can get the car to the mechanic or what we're going to

[00:38:38] wear in order to make the best impression in some business presentation.

[00:38:42] Noah is primarily interested in one thing in particular.

[00:38:47] People.

[00:38:48] If you got a haircut, if you got new glasses, if you had a new jacket, he noticed,

[00:38:54] hey, I like your haircut.

[00:38:56] He still compliments people all the time.

[00:38:59] One time Noah was walking down the street and an adult neighbor zoomed past him on

[00:39:03] his bike when Noah called out to him, Phil, you shaved your beard.

[00:39:07] Phil slammed on his brakes, turned around and came back and said, what did you say?

[00:39:12] Phil, you shaved your beard.

[00:39:15] He said, Noah, my wife didn't even notice.

[00:39:18] I've been with her all day.

[00:39:20] Noah's like, well, I'll tell her.

[00:39:22] I can tell Nikki.

[00:39:23] It was just normal for Noah to be incredibly in tune with what was going on with people

[00:39:27] around him in ways that the rest of us are probably oblivious to.

[00:39:32] Or maybe we're too busy perhaps thinking about our own lives to notice others in such

[00:39:36] a personal way. He remembers details about you and is so interested that he will bring

[00:39:41] them up and ask you, hey, how's this going?

[00:39:43] Like if you told him like your football jersey number five years ago and then you

[00:39:49] haven't seen him since. If you saw him, he would be like, oh yeah, your number, whatever.

[00:39:54] And they just are like, what?

[00:39:55] You tell him your birthday right now and he'll tell the whole world your birthday and

[00:40:00] your name, your middle name.

[00:40:01] He sees you today and you tell him a story, you know, about something that's happening

[00:40:05] to you. He will say, mom, we got to put that name on our prayer board and then he'll pray

[00:40:10] about it. And then he sees you the next time and he remembers the details of that story.

[00:40:14] Even though you've already been through it and you kind of forgot about it, he cares

[00:40:20] about that. And he comes back and he checks in with people.

[00:40:25] He doesn't forget what's important.

[00:40:27] And other things that are so typically important in society like money are just not

[00:40:32] important in Noah's world.

[00:40:34] If he has money, he just wants to give it away.

[00:40:36] One year for Christmas, Noah got some Toys R Us gift cards from some friends and he

[00:40:40] immediately tried to give those gift cards to his sisters.

[00:40:44] And when his sisters kindly declined and explained to him that those were for him, he

[00:40:48] went to the store and used the gift cards to pick out toys for each of his sisters.

[00:40:53] He doesn't want anything.

[00:40:54] All of his needs are met because he's here with us.

[00:40:58] Because nothing matters more to Noah than people.

[00:41:01] He loves socialization, loves relationship.

[00:41:04] I don't think I've ever heard him say anything mean to anyone in my life.

[00:41:07] Yeah, he's got an awesome heart.

[00:41:09] And it really affects Noah emotionally when others around him feel sad.

[00:41:13] Noah doesn't want people to be mad or hurting.

[00:41:19] He isn't going to add to that.

[00:41:20] And if he does, he feels great.

[00:41:21] If he thinks he did, he feels great remorse.

[00:41:23] Whether that empathy grew out of having Down syndrome or social upbringing, his

[00:41:28] natural temperament or something else, Kara isn't sure.

[00:41:32] I'm having a bad day.

[00:41:34] He wants to make it better.

[00:41:35] Noah lives to serve people.

[00:41:37] That's his thing.

[00:41:38] It's normal for Noah to wake up and butter some toast or set out glasses of ice water

[00:41:43] for other members of the household to have once they wake up.

[00:41:46] I helped my grandma out.

[00:41:50] And every day I give her a bottle of water.

[00:41:54] And that's enough.

[00:41:57] And my mom, I made her coffee.

[00:42:01] When he rolls the family garbage cans out to the curb on trash day, he makes sure to

[00:42:05] also take out the trash cans for the neighbors if theirs aren't already out yet.

[00:42:09] If you ask him to do something, he'll do it like this.

[00:42:12] There's no hesitation.

[00:42:13] Noah and I were very close in age, so we did a lot of the same things.

[00:42:16] We were always really close.

[00:42:17] I remember in high school, Noah would always try to come into my classrooms.

[00:42:22] And so he'd always be knocking on the door.

[00:42:24] And until I acknowledged Noah, he wouldn't go away.

[00:42:26] And then he would say, I love you.

[00:42:28] And then he would go about his day.

[00:42:30] And on top of all of this, Noah has always had a great sense of humor.

[00:42:34] Some of the things he says are just so funny.

[00:42:37] Like, he is always looking for a joke and he's always looking to make people happy.

[00:42:42] And I think that's why he has such a good sense of humor is because he's trying to

[00:42:45] make people, you know, happy and smile.

[00:42:48] Tell her the joke about the toilet paper.

[00:42:50] OK, why the toilet paper didn't cross the road?

[00:42:56] Why? I don't know.

[00:42:58] You're stuck in a crack.

[00:43:04] In middle school, Noah developed a love for the performing arts.

[00:43:08] Everything from choir to band to theater.

[00:43:11] Noah jumped in.

[00:43:12] At one point, his middle school held auditions for The Wizard of Oz.

[00:43:16] And Noah really wanted to be the Tin Man because he really wanted to wear the cool

[00:43:20] costume. When the show director, who was a teacher at the school, found out that Noah

[00:43:25] was going to audition for the part of the Tin Man, he called Kara on the phone,

[00:43:29] terrified of disappointing Noah.

[00:43:31] And he asked her to tell Noah not to try out.

[00:43:34] But Kara wasn't having it, even if Noah wasn't the right person for the part.

[00:43:38] So she told the show director, if he doesn't learn this, how is he going to ever know

[00:43:43] how to experience and work through disappointment and then encourage the kid who got

[00:43:48] it? I don't know how else to teach him that.

[00:43:50] The show director was not thrilled with what he was hearing.

[00:43:54] And he was like, so seriously, you want me to let him try out?

[00:43:58] I said, I do. And I trust you to coach him through it.

[00:44:02] And he said, OK, Noah tried out for the Tin Man, didn't get the part.

[00:44:07] This guy explained to him that not everybody can have the part.

[00:44:09] Look at all these kids who tried out and didn't get it.

[00:44:11] But here's your role.

[00:44:13] So he was a flying monkey, you know, doing the dance with its swirling tail.

[00:44:17] And he had another role in that, too.

[00:44:18] So he still participated in the big group like most kids did.

[00:44:22] And he could still cheer on the Tin Man.

[00:44:25] Great life lesson, right?

[00:44:26] We all have to learn it.

[00:44:27] Why would I protect him from that?

[00:44:30] Another time in middle school, Noah came home with the realization that he wanted to

[00:44:34] ask his mom about.

[00:44:35] He said, Mom, how come all my friends are girls?

[00:44:39] And I said, what? And he said, I have lots of girlfriends, but I don't have any

[00:44:43] boyfriends. Why do I only have girlfriends?

[00:44:46] And I said, I think it's because you compliment them and you make them feel good

[00:44:51] about themselves and you notice things.

[00:44:54] And girls really like that.

[00:44:56] Boys, they could care less.

[00:44:58] And he was like, OK.

[00:44:59] I said, boys only care if you can run fast and dribble a ball.

[00:45:03] But girls care how you make them feel.

[00:45:05] And I think that's why you have friends who are girls.

[00:45:08] OK. And he was good with that.

[00:45:10] But as middle school turned into high school, something interesting happened.

[00:45:14] The boys started to notice all the girls that constantly circulated around Noah.

[00:45:19] And during his freshman year, Noah signed up to play in a recreational basketball

[00:45:23] league.

[00:45:24] Todd takes him to the meeting the first night and there were two teams because there

[00:45:27] were so many boys in the freshman class signed up and they both were, no, we want

[00:45:31] Noah. No, we want Noah.

[00:45:32] No, Mr. B, we're going to play with us.

[00:45:34] No, no, make a play with us.

[00:45:35] And Todd's like, Eric, what's going on?

[00:45:37] Eric was a family friend and a buddy to Noah.

[00:45:39] Eric goes, they know all the girls will come if Noah's on their team.

[00:45:43] So that's why they want him.

[00:45:44] He was a magnet for them.

[00:45:46] And where he may have originally been seen as a girl magnet by some of the guys, it

[00:45:51] didn't take long for the guys to realize how awesome Noah really was, even with the

[00:45:55] girls out of the picture.

[00:45:57] And he started to make a lot of friends because Noah was always very visible in

[00:46:02] school. After all, he was attending the same classes as everyone else.

[00:46:06] And with his authentically caring demeanor and uncommon passion for people, he was

[00:46:10] hard to miss. He was in regular classes.

[00:46:13] Sometimes he would go to the special education room if they were, but he took

[00:46:16] cooking classes, for instance.

[00:46:17] And then a co-teacher would come along just to have there for extra help.

[00:46:21] Noah took all the typical classes from math to English, from physics to

[00:46:25] woodworking, chemistry, biology class.

[00:46:27] He even played percussion in the school band.

[00:46:30] He got a cowbell last year for Christmas.

[00:46:32] I had to hide that thing.

[00:46:33] And even though Noah was taking a curriculum of classes meant for any person his

[00:46:37] age, it's true that delayed learning is a symptom of Down syndrome.

[00:46:41] When it comes to reading, Noah can read words.

[00:46:44] But by the time he gets to the end of a sentence and he has to sound out a few

[00:46:47] like not sight words that he has in his head, then he forgets what he was even

[00:46:51] reading about because he spent so much time decoding one word.

[00:46:54] So reading is not really his thing.

[00:46:56] But he can read, you know, a lot of stuff, especially fast food signs.

[00:47:01] They've always been some of his favorites.

[00:47:03] Those are some of his first words.

[00:47:04] Kara says he probably would never read like a book or a newspaper voluntarily.

[00:47:09] That said, it doesn't mean he is indifferent about current events because

[00:47:13] current events have to do with his very favorite subject, people.

[00:47:17] Noah loves presidential history.

[00:47:19] He will watch inaugurations.

[00:47:21] He will watch funerals of the Kennedys, the Reagans, any, any.

[00:47:25] He can answer very many questions about the president and the first lady.

[00:47:29] And being surrounded by kids and teens his whole life who did not have Down

[00:47:33] syndrome, I couldn't help but wonder how they treated Noah growing up, assuming

[00:47:38] that there must have been moments where kids were unkind.

[00:47:41] He took his lunch train, went to middle school, went to a table and one of the

[00:47:44] boys was already sitting there and he said, you can't sit there.

[00:47:47] Joe was sitting there.

[00:47:48] OK, so Noah slid his tray down and they said, well, you can't sit there.

[00:47:51] Michael's sitting there.

[00:47:53] So then he made it all the way around the table before they, you know, and they

[00:47:56] kept telling him you can't sit there, you can't sit there.

[00:47:58] Finally, he just sat down in the chair.

[00:47:59] Well, if they're not here yet, then I can't.

[00:48:01] Then I'm first.

[00:48:02] So I'm sitting here.

[00:48:03] And he sat down.

[00:48:04] He learned some of that.

[00:48:06] I think sometimes he was oblivious to the fact that people weren't as accepting

[00:48:11] of him.

[00:48:11] Maybe not always, but because Noah was so in tune with others feelings, he often

[00:48:16] knew something was wrong when he wasn't being treated well.

[00:48:19] I think Noah's an easier target because he doesn't always pick up on it, but he

[00:48:24] has a feeling. So he would say to me, I don't think that person likes me.

[00:48:29] Even if they didn't really say anything to him, it's just the way they treated

[00:48:32] him or moved around him, didn't include him.

[00:48:35] So he could pick up on it, but I don't think he understood that it was an

[00:48:40] intentional and mean.

[00:48:41] I think he felt more like, I think they're having a bad day.

[00:48:44] Noah's father, Todd, recalls how painful it can be when someone uses the

[00:48:49] derogatory R word aimed at anyone with or without a disability.

[00:48:53] The word, and I am going to say it here so that there's no confusion, is

[00:48:57] retarded.

[00:48:58] A person with a disability has enough struggle already and they don't need

[00:49:04] that, you know, so they don't need that, you know, that much more burden on

[00:49:08] them.

[00:49:08] And thankfully, these tough moments were few and far between thanks to their

[00:49:13] supportive community.

[00:49:14] He has a very best friend from third grade.

[00:49:17] Her name is Ariel.

[00:49:18] Young girl that didn't have to become his friend.

[00:49:21] And she's his best friend.

[00:49:23] She was an amazing conduit to the other kids.

[00:49:29] She was his right hand.

[00:49:31] Noah's coming. Nope.

[00:49:32] You'll be nice to him.

[00:49:34] Nope.

[00:49:34] You're not going to treat him like that.

[00:49:36] Yes, he, you know, she was his whole life.

[00:49:40] It helps that she ended up being a real popular girl in school.

[00:49:43] I think part of her popularity is because she had a heart for Noah.

[00:49:48] It says a lot about the kind of person she is.

[00:49:50] One freshman boy who was new to the school admitted later to Kara that he had

[00:49:54] been a little confused to see Noah in the same intro to physics class thinking

[00:49:59] what in the world's going on?

[00:50:00] He said it distracted me for like the first week.

[00:50:03] Like, what is he doing?

[00:50:04] Is he listening?

[00:50:05] What you know, like, how does he take all this in?

[00:50:08] And he's like, and then I figured it out.

[00:50:10] He does listen.

[00:50:11] He does, you know, he might not understand it the way I put it together and use it

[00:50:15] later as an engineer, but he got the motion.

[00:50:19] Like he's like, I was just a shock.

[00:50:21] So Ariel had a lot to do with him and her friend group being included, being

[00:50:26] respected.

[00:50:27] His sister, Jill, who remember was only two years younger than Noah, was also by

[00:50:32] his side through a lot of his school days, making sure he was happy and

[00:50:35] respected.

[00:50:36] I remember a lot of the times when like Noah would get upset or Noah would be in

[00:50:41] school and the teachers always would be like, where's Jill?

[00:50:44] And I would just come up and be a supportive person.

[00:50:48] All the while with Kara and Todd raising Noah just as they were their other kids,

[00:50:52] making adjustments along the way as needed.

[00:50:55] So Noah grew up with confidence, not feeling particularly different from his

[00:50:59] peers.

[00:51:00] Noah wanted to get a driver's license.

[00:51:02] Everybody else was getting a driver's license.

[00:51:04] I didn't know what to do because I just know he doesn't have the reaction time.

[00:51:10] But Noah insisted his friends were all getting their driver's licenses and so he

[00:51:14] wanted one too.

[00:51:15] And I didn't ever want to be the person to tell him no, just because.

[00:51:20] How could his mother explain that he couldn't get a license without instilling

[00:51:24] feelings in him that it was because he was, as they say, different than others?

[00:51:30] But she could think of no way to adequately turn Noah down without risking that

[00:51:34] conversation.

[00:51:35] So instead,

[00:51:37] just as she had relied on the director of the middle school play to help guide

[00:51:40] Noah through a life lesson,

[00:51:42] this time she took Noah to the DMV hoping against hope that someone there would

[00:51:48] know what to say.

[00:51:49] Which I've got to say is putting a lot of faith in the DMV.

[00:51:53] Now serving 848 at window number 33.

[00:51:57] We waited in line and we went up to the next desk and the lady said,

[00:52:02] how can I help you?

[00:52:02] And Noah said, I want a driver's license.

[00:52:05] And she looked at me.

[00:52:06] The DMV employee searched Cara's face intently until contrary to the bad rap

[00:52:11] attached to the DMV,

[00:52:13] she was able to recognize a mother's plea for help in Cara's eyes.

[00:52:17] She looked kindly back at Noah.

[00:52:20] And she said, well, Noah,

[00:52:20] let's talk about what it means to have a driver's license.

[00:52:24] And she told him, you have to be able to pass this test.

[00:52:28] You have to study this book and pass this test.

[00:52:30] And then if you do that,

[00:52:31] then you can ride with your mom and dad for a while.

[00:52:34] And when you get good at that,

[00:52:35] you can come in and take a test with another driver.

[00:52:37] But she said, let me tell you something.

[00:52:40] If you got your driver's license and you weren't really skilled at driving,

[00:52:45] like if you couldn't move your foot fast enough to the brake and you hit

[00:52:49] somebody or someone on a bike or another car, how would you feel?

[00:52:53] And he said, I'd feel terrible.

[00:52:56] And she said, yeah,

[00:52:58] that's why it's such an important decision and why we have to be so careful

[00:53:03] because we don't want anybody to hurt anyone.

[00:53:05] And we don't want you to get hurt.

[00:53:07] And she just spent some nice time with him and he said, okay, well,

[00:53:10] I guess I have a lot to think about.

[00:53:12] Noah didn't pursue his driver's license after that all because the woman at the

[00:53:17] DMV took the time to help him think through the decision,

[00:53:20] something Cara was grateful for.

[00:53:23] When you can have other people help him through those, it's just way better.

[00:53:27] And as Noah grew up, his community stepped up on many occasions,

[00:53:31] just like the woman at the DMV. In fact, in high school,

[00:53:34] Noah wasn't just respected, but he was loved, even adored.

[00:53:39] One day when Noah was a junior in high school,

[00:53:42] Cara got a phone call from the school.

[00:53:43] They just called me from school one day and said, Hey, Cara, if Noah,

[00:53:48] let's just say he makes the prom court. I was like,

[00:53:53] Oh no, he made the prom court?

[00:53:56] They're like, let's just say that if that would happen,

[00:53:59] would that be okay with y'all? Because you know,

[00:54:01] like you have to rent a tux and it can be kind of pricey.

[00:54:05] And well, we just want to make sure it would be okay with you.

[00:54:08] And I said, do you call all the kids who make the prom court and ask them that?

[00:54:12] And they said, Oh no. And I said, then don't treat us any differently.

[00:54:17] If he makes the prom court, we will make it happen. And they were like, okay,

[00:54:20] well, we just wanted to make sure. And I was like, okay.

[00:54:24] So the next day they announced the court, there's Mr. Noah on the court.

[00:54:27] Proud as a peacock. I don't think he has any idea what it even, like, you know,

[00:54:30] he knows they voted.

[00:54:32] And at Noah's school, once the prom court is selected,

[00:54:35] the juniors at the school vote for who they want to be king and queen.

[00:54:39] And then on prom night, the king and queen are announced and crowned.

[00:54:43] So prom night arrived and family members of the prom court came to cheer on their

[00:54:48] teenager who could possibly wear the crown. Kara, Todd,

[00:54:52] and Jana along with some neighbors and some friends were all there to support

[00:54:55] Noah, who stood in a tux happy as ever,

[00:54:58] just to be among the people he cared about. Jill,

[00:55:02] his sophomore sister stood by his side as his smiling date.

[00:55:06] He was like, mom, I want to take Julie.

[00:55:07] We went together and it was just a really cool experience.

[00:55:10] Then the junior class advisor,

[00:55:12] who was also one of Noah's favorite teachers stood to announce the king and

[00:55:16] queen. He announced the queen first.

[00:55:19] And it was a girl that we adore. She's a sweet girl.

[00:55:22] And then it was time to announce the king.

[00:55:25] The advisor opened his mouth and spoke Noah's name.

[00:55:28] And the whole place erupted. Like it got so loud.

[00:55:34] And I was just,

[00:55:35] I think I was stunned and I looked over at Jana and tears were flowing down her

[00:55:38] cheeks. And I'm like, you're crying. So are you. You know,

[00:55:41] I didn't know I was even crying. He was just so happy.

[00:55:45] And Kara was happy for Noah and not just for Noah, but for everyone.

[00:55:49] To be honest,

[00:55:50] she couldn't help thinking back to her own days in high school where a person

[00:55:54] with Down syndrome would never have been considered for such an honor among

[00:55:58] peers.

[00:55:59] Just the fact that Noah had made the prom court had reached beyond her

[00:56:03] expectations, not for Noah, but for society.

[00:56:06] She may be making a point not to treat him differently,

[00:56:09] but she couldn't control how differently others saw him. But in the end,

[00:56:15] others had come even further than she could have imagined.

[00:56:18] And she took pride in her community as well as in her sweet son,

[00:56:21] as she watched him dance the rest of the night away.

[00:56:24] It didn't feel like it was out of any other motive.

[00:56:27] It was a genuine wanting Noah to be a part of this community.

[00:56:32] And it really showed that day and also throughout his high school career of

[00:56:36] just how much he was loved and appreciated in the school.

[00:56:39] And Noah's high school community was about to surprise Kara again.

[00:56:44] Noah will be the first to tell you.

[00:56:52] My favorite sport is football.

[00:56:54] When you're taking on Aaron Rodgers, you better come out ready to go.

[00:56:56] Noah is a big green Bay Packers fan and had even befriended the team's

[00:57:01] equipment manager when he was six years old,

[00:57:04] allowing him to go backstage where the Packers play a number of times.

[00:57:08] And while Noah wasn't in physical condition to actually play on the high school

[00:57:12] football team, he did find a position that fit him well.

[00:57:16] He was the hydration specialist.

[00:57:21] Hydration is like being a water boy.

[00:57:22] Noah never wanted to be called water boy.

[00:57:24] It was always hydration specialist.

[00:57:26] And Noah continued in that role throughout all four years of high school.

[00:57:30] From the stands,

[00:57:31] Kara would catch him not only being diligent and passing water to the other

[00:57:35] players,

[00:57:36] but saw him putting his arm around an injured player sitting on the bench or

[00:57:39] hyping up other people on the team.

[00:57:41] And after four years as the diligent hydration specialist,

[00:57:45] the final football game of Noah's senior year was upon them.

[00:57:49] It was then that Kara got a phone call she didn't expect.

[00:57:53] It was from the high school's football coach. He said,

[00:57:56] Tonight's game, because it's our last home game,

[00:57:59] we would like Noah to score a touchdown.

[00:58:01] The boys brought this to me at the beginning of the season,

[00:58:05] that it was important to them.

[00:58:06] They got together and brought the idea up to the coach and said, Hey,

[00:58:10] we want Noah to suit up and score a touchdown.

[00:58:13] It was the coach's first year with the team.

[00:58:15] And he hadn't really interacted with Noah when the team first brought the idea

[00:58:19] to him at the beginning of the season. And he told Kara,

[00:58:22] I thought it would go away, honestly,

[00:58:24] because I've never done anything like this before.

[00:58:26] But then I saw them work together all year and we know it's something we need to

[00:58:31] do. The boys want to do this.

[00:58:33] Kara was surprised they wanted Noah to score a touchdown.

[00:58:38] He was a devout and dedicated hydration specialist to be sure,

[00:58:42] but he had never been a football player. How would it even be possible?

[00:58:46] Especially when the other team would obviously want to prevent them from

[00:58:50] scoring any additional touchdowns.

[00:58:52] The coach explained that they had already spoken to the other team who not only

[00:58:56] agreed, but agreed enthusiastically.

[00:59:00] Apparently the other team had had a terrible season with very few wins,

[00:59:05] if any. They weren't expected to win this game either.

[00:59:08] So leaving this season on an inspiring note sounded like a great punctuation mark

[00:59:12] for them. That night,

[00:59:14] Kara and the family went to the high school for the game. It was a chilly night,

[00:59:18] but a special one starting off differently from the very beginning.

[00:59:22] When they got to the start of the game, they made him an honorary captain.

[00:59:26] So he walked out onto the field,

[00:59:27] linking arms in the middle of the other captains.

[00:59:30] When they did the coin toss,

[00:59:31] they let Noah call whether it was heads or tails.

[00:59:34] And when Noah came back to the bench,

[00:59:36] he was so proud and so happy.

[00:59:37] Like that would have been the highlight of that whole thing for him as a senior.

[00:59:41] The game continued with Noah's team ahead.

[00:59:44] And then as the end of the game drew near,

[00:59:47] one of the coaches approached Noah holding some shoulder pads.

[00:59:51] Noah looked up at him a bit bewildered,

[00:59:53] but determined to do any duty that was asked of him.

[00:59:56] Noah looked at him and said, am I going in? And he said, you are.

[01:00:01] Noah ripped off his jersey, put on the shoulder pads and helmet,

[01:00:04] and stepped onto the field. This time as a football player.

[01:00:07] He got to go in the game. It was so cool.

[01:00:10] The team's quarterback approached Noah, football in hand.

[01:00:13] Hey, Noah, here, take this. Okay.

[01:00:16] And I just ran, big smile, big grin,

[01:00:20] and I scored out of the whole touchdown.

[01:00:23] The local Fox News team was there to cover the game.

[01:00:25] I'm so happy my parents are here today.

[01:00:29] Never been like tonight.

[01:00:30] Van Voren has Down syndrome. Yet on this field,

[01:00:33] he's always been one of the guys.

[01:00:35] He's always positive, walking on the sideline.

[01:00:37] They'll pat you on the back.

[01:00:38] They'll say you're doing a great job.

[01:00:39] His teammates said they wanted to repay him.

[01:00:42] So they and the whole town had an even bigger surprise

[01:00:44] waiting for Van Voren on the chilly October night.

[01:00:54] As the clock ticked down in the fourth quarter of a blowout win,

[01:00:57] the final home game came to a close, but there was time for just one more play.

[01:01:03] It was Van Voren's turn to take the ball.

[01:01:07] The Clintonville Truckers let him pass

[01:01:10] and away ran number 14, flanked by his teammates

[01:01:13] down the field all the way to the end zone.

[01:01:18] His first touchdown.

[01:01:19] I made a touchdown. I did great.

[01:01:22] Moved by the scene, Todd put it best.

[01:01:24] He was born 18 years ago,

[01:01:26] and the doctors told us that he would never build a walk, talk or do anything.

[01:01:30] The doctor they had left behind, never looking back.

[01:01:33] And then to see him 18 years later to do this is amazing.

[01:01:38] It's amazing.

[01:01:39] And to have a community as a little shoot to

[01:01:43] to back him up and to me,

[01:01:47] to love him the way they do is is you can't you can't put it in words.

[01:01:51] You really can't.

[01:01:52] I was surprised.

[01:01:55] Mom was crying and crying and I gave her a hug.

[01:01:58] So it's kind of cool that like everyone came together to celebrate him.

[01:02:04] Just to see like.

[01:02:08] Just to see all the people that actually like him,

[01:02:10] because I see all these other kids that like I went to school.

[01:02:13] They never got that opportunity.

[01:02:14] I just remember bawling and crying in the student section

[01:02:18] because like what an accomplishment and what a great thing

[01:02:21] he will always remember getting to do.

[01:02:23] And for the other team and the other school to be so willing

[01:02:27] and just so positive about it, it's really cool to experience.

[01:02:31] And like you get the goosebumps thinking about it.

[01:02:34] The National Fox News Network picked up the story

[01:02:39] and posted the video on their YouTube channel,

[01:02:41] where it has more than six million views.

[01:02:44] And for Kara, watching the love people had for Noah was heartwarming.

[01:02:49] And from her perspective, it made sense.

[01:02:51] She knew her kindhearted boy better than anyone and was glad

[01:02:54] that others had picked up on his qualities that made him particularly likable.

[01:02:59] And yet at the same time, on the flip side, all of this was again unexpected.

[01:03:05] Not only was the attention paid to him seemingly non-traditional,

[01:03:09] but she had raised Noah the same way she had raised her other kids,

[01:03:12] going to great lengths to not let Down syndrome define who he was.

[01:03:16] And even with the equal approach to raising Noah,

[01:03:19] it seemed society saw him differently.

[01:03:22] There was something about Noah that drew people in and kept them there,

[01:03:26] giving them a desire to love him and put him on a pedestal.

[01:03:29] Was it because Noah was authentically kind to those around him

[01:03:33] and people naturally respond to kindness?

[01:03:35] Was it because Noah unconventionally discarded worldly considerations

[01:03:39] in trade for really understanding and loving people?

[01:03:43] Could it even be that people have an innate desire to serve others?

[01:03:47] And as a recipient, as genuine as they come,

[01:03:51] Noah became the subject of that service, filling others with the joys

[01:03:55] that come with it.

[01:03:56] I asked his sisters about all of this.

[01:03:58] I think it's the smile on his face and just the big welcoming person he is.

[01:04:03] And I don't know, he's just so funny and he can talk to anyone.

[01:04:09] He can talk. Yeah, I don't know.

[01:04:11] It's just his personality.

[01:04:12] And I'm not sure I'm not sure what it is, but

[01:04:16] I think those are the reasons why people get so drawn to him

[01:04:19] is because he's just so nice.

[01:04:21] There's never I've never heard him say anything mean to anyone, you know, like

[01:04:25] everyone knows that when they go and talk to Noah, he's going to be

[01:04:29] he's going to be nice and someone to just listen, you know.

[01:04:31] I don't even know how to put it into words.

[01:04:34] Noah is so accepting and he is just such a community guy.

[01:04:39] And every time he sees you, he smiles.

[01:04:41] Whatever the reason may be, it's clear that just having Noah in their midst

[01:04:46] was enough to bring out the best in people, the best in society.

[01:04:50] When originally Kara and Todd had moved to Wisconsin

[01:04:53] so that Noah could grow up near extended family.

[01:04:56] We thought we had to come to a place where people had to love him

[01:04:58] because they were related to him.

[01:05:00] He was their blood family.

[01:05:02] But what we quickly learned is that while that was really awesome

[01:05:05] and that did happen for us, people loved him

[01:05:08] just because of who he was, not because we were related.

[01:05:12] And the love didn't stop there in their Wisconsin town.

[01:05:15] Other media outlets across the nation, like The Huffington Post,

[01:05:18] even picked up the story.

[01:05:20] And soon Noah was touching hearts around the globe.

[01:05:23] So many people celebrated this act of kindness

[01:05:26] and fell in love with this hydration specialist.

[01:05:29] And Noah's fame didn't end with that football game.

[01:05:32] A few months later, another video of Noah went independently viral.

[01:05:36] This time, one of him opening a college acceptance letter.

[01:05:39] Part of our expectations for our kids was you have to try what you want to do.

[01:05:44] Right. And there was no question that the girls would go to college.

[01:05:48] Nobody questioned that.

[01:05:49] But Noah said to us one day, I want to go to college.

[01:05:52] My friends are going to college and I want to go to college.

[01:05:54] Todd and Kara looked at each other.

[01:05:56] We have never, ever told him he couldn't do something.

[01:05:59] And since we're aware of these opportunities, what if we have him interview?

[01:06:05] If they don't accept him, that's that's OK.

[01:06:08] That's the way it goes.

[01:06:10] After all, this wasn't the first time Noah had applied for an opportunity

[01:06:13] he might not get.

[01:06:14] And so we thought kind of like the musical.

[01:06:17] Let's let him try out and see what happens.

[01:06:20] If he's disappointed, we'll coach him through.

[01:06:22] So they helped Noah apply for a college program designed for people

[01:06:26] with learning disabilities who had strong independent living skills.

[01:06:30] And when the letter arrived, they didn't know what it was going to say.

[01:06:34] In fact, Kara had her serious doubts that Noah was going to be the right fit

[01:06:38] for this particular program, but not wanting to shield her son from reality

[01:06:44] just as she wouldn't either of her daughters.

[01:06:46] She handed the envelope to Noah and told him to open it.

[01:06:50] While running camera, of course.

[01:06:52] Well, you have to see if you got it.

[01:06:57] Who is the letter from?

[01:06:58] Must be from Edgwood.

[01:07:02] Yeah.

[01:07:03] Somewhat nervously, Noah begins to tear the letter open.

[01:07:07] Let's see what it says.

[01:07:09] Did Dad read it to you?

[01:07:13] No. Oh, just read it yourself.

[01:07:16] Yeah.

[01:07:18] It says, Dear Noah, yes, you made it.

[01:07:22] You did not.

[01:07:23] Yes, you did Noah, 16.

[01:07:26] Noah scans the words on the page until he realizes.

[01:07:29] I accepted!

[01:07:31] Yes! Dad, you rock! I love you!

[01:07:36] Daddy, read it.

[01:07:36] I accepted! Yes! Yeah! Yeah!

[01:07:40] Here he strips off his sweatshirt and starts flexing like the Incredible Hulk.

[01:07:44] Yeah!

[01:07:51] Ladies and gentlemen, in the most extra-legal

[01:07:54] No Man's Land!

[01:07:58] That video has well over a million views and almost 10,000 likes,

[01:08:02] inspiring additional articles and reposts from media outlets around the world,

[01:08:07] including the Daily Mail and Inside Edition.

[01:08:10] Many people didn't even know that a person with Down syndrome could go to college

[01:08:14] and others around the world were simply touched by his reaction,

[01:08:17] by his ability to feel, to really feel pure joy in that kind of moment.

[01:08:23] People that I know or meet, we're all looking for something

[01:08:28] that's better than what we have or that we see.

[01:08:33] We're all looking for that kind of joy and we rarely let ourselves feel it.

[01:08:39] Because my other girls got college acceptance letters and they were like,

[01:08:43] Oh, great. You know, I got these through that I really wanted.

[01:08:46] That's the extent of their joy and excitement. For Noah, this was so big.

[01:08:51] And while being Noah's mom brought many moments of joy to Kara just like this one,

[01:08:56] it also came with moments she felt her heart might break.

[01:09:00] One particularly difficult time for Kara was when she had to file

[01:09:03] for guardianship for Noah.

[01:09:05] The thing about guardianship is they have to declare you incompetent

[01:09:09] to make your own decisions. And I hate that word.

[01:09:11] And that word is in all the paperwork.

[01:09:13] The doctor has to fill it out to say he can't make his own decisions

[01:09:17] because he doesn't understand the consequences.

[01:09:19] And while I know that it's true, it just didn't sit well.

[01:09:23] In case you aren't familiar, filing for guardianship means obtaining

[01:09:27] the legal authority to make decisions for an adult.

[01:09:30] In Noah's case, Kara knew she had to file for guardianship when he turned 18,

[01:09:35] but she dreaded it.

[01:09:36] I never wanted to do that. Right?

[01:09:39] You never want to say to a person, you can't make your own decisions.

[01:09:42] You're not capable. So here I am coming in to save the day.

[01:09:46] I never wanted to do that.

[01:09:47] Kara took Noah to a workshop about guardianships

[01:09:50] to help him understand the process that they would be going through,

[01:09:53] which brought up a question in Noah's mind.

[01:09:55] He goes, where are we going to put it?

[01:09:58] Kara was confused. Where were they going to put what?

[01:10:01] He goes, mom, we have a camper.

[01:10:03] We have my golf cart.

[01:10:05] We have your car and dad's car.

[01:10:07] Where are we going to put the guardianship?

[01:10:09] Like a boat.

[01:10:11] Apparently, Noah thought a guardianship was an actual ship,

[01:10:15] which couldn't help but make Kara smile.

[01:10:19] But even still, when the day came to sit in a courtroom in front of a judge,

[01:10:23] Kara tried to hold back tears.

[01:10:25] The judge was thankfully incredibly kind.

[01:10:28] She had seen Noah on the news and knew what a popular guy he was.

[01:10:32] And she acknowledged that his popularity was for good reason.

[01:10:36] And she said, but here's the part, you know, that we have to say out loud.

[01:10:40] And it makes me uncomfortable, but it's required by law.

[01:10:44] And the tears just start rolling.

[01:10:46] Kara couldn't hold back.

[01:10:47] She started bawling.

[01:10:49] The judge continued with the proceedings and afterwards approached Kara kindly,

[01:10:53] saying that she's never seen someone start crying like that

[01:10:56] over a guardianship before.

[01:10:57] I said, it just breaks my heart that, you know, we have to use this kind of language

[01:11:02] when, is he incompetent?

[01:11:05] No, he's competent in so many things.

[01:11:08] People in this room have no idea about.

[01:11:12] But yeah, if he signed up for a credit card, he wouldn't know what he was doing.

[01:11:15] If he, you know.

[01:11:17] So I get it that that's what we're doing to protect him from.

[01:11:20] But that was a hard day.

[01:11:22] It was a hard process.

[01:11:24] And people don't think about that when they're cute and little.

[01:11:27] And you don't realize that one day before you know it,

[01:11:30] you're going to be sitting in that courtroom.

[01:11:32] And that's what you have to do.

[01:11:34] But like everything else, Kara had to admire how Noah took it in stride.

[01:11:38] Anyone want to sing a noise?

[01:11:42] Can you feel the music?

[01:11:46] Today, Noah lives a life as vibrant as ever.

[01:11:50] I have a new dog, Emethiel.

[01:11:54] He's a high functional young man.

[01:11:56] Gets around, talks, tells you jokes, loves to eat just like us.

[01:12:01] He finds himself spending a lot of time singing in the church choir

[01:12:05] and volunteering in the community,

[01:12:07] including with the local police department where he knows everyone's names.

[01:12:10] He has brought a lot of those people into our lives we would have never known.

[01:12:15] We see so many people who go above and beyond in their lives for other people.

[01:12:20] And we would not have seen that without him.

[01:12:22] And Noah's personality continues to make Kara smile.

[01:12:26] He asked me, who do you love the most?

[01:12:28] And I said, Noah, you know, it's pretty clear in the Bible

[01:12:30] that you're supposed to love God first, then your dad and then you and your sisters.

[01:12:35] Well, Mom, I don't like it like that.

[01:12:36] You can love God, but then you got to love me.

[01:12:38] And I said, no, that's not how it works.

[01:12:41] A few days later, he comes into my room.

[01:12:42] He said, Mom, I had a little talk with Jesus last night.

[01:12:46] I said, you did? Yeah, he came in my room and we talked about it.

[01:12:49] And he said, it's OK if you love me more than dad.

[01:12:54] No, that did not happen.

[01:12:59] He's very creative.

[01:13:00] He's continued to keep a presence in the public eye as well,

[01:13:03] being featured on the news at his first game as an assistant coach

[01:13:07] in the Miracle Baseball League, a sports league for children and adults

[01:13:10] with special needs.

[01:13:12] And I love this.

[01:13:13] In 2018, he was asked to sing the national anthem at Life Fest,

[01:13:18] which is a massive Christian music festival in Wisconsin

[01:13:21] where he soloed in front of more than 20,000 people.

[01:13:39] I'm a pro-leader, and that is what I must be.

[01:13:49] He also recently even threw out the first pitch at a minor league baseball game.

[01:13:54] And as far as having Down syndrome goes, no one knows he has something like it,

[01:13:59] but he doesn't really think about it as making him different than everyone else.

[01:14:03] I think at some point in time, someone must have said that to him.

[01:14:07] Like, well, no, you can't do that because you have Down syndrome.

[01:14:09] I don't think that came out of us, but someone probably did.

[01:14:12] Kara found out when one day Noah didn't feel like doing something

[01:14:15] he was asked to do,

[01:14:17] and he suddenly announced that he couldn't do it because he had, quote,

[01:14:20] the Down syndrome.

[01:14:21] He's like, well, you know, I can't do that.

[01:14:23] I have the Down syndrome.

[01:14:25] Whoa, back up.

[01:14:27] And, you know, it was kind of a funny moment in this house

[01:14:30] because none of us had ever heard that before.

[01:14:32] So he'll try to get away with something and put it on that.

[01:14:35] Like, oh, I can't I can't take the garbage out tonight because, well,

[01:14:38] you know, I got the Down syndrome.

[01:14:40] I think he thinks of it more like a cold.

[01:14:43] He understands he's different from other people,

[01:14:46] but he thinks everybody's different.

[01:14:48] He doesn't assign a negative meaning to it.

[01:14:50] And as far as career aspirations go, Noah has his own.

[01:14:54] Every now and then he'll say, I want to be a Jewish Catholic priest.

[01:14:58] It will be like, I don't think that exists, buddy.

[01:15:00] God is my soul.

[01:15:02] And he brings joy to bring with my heart.

[01:15:09] And. And Jesus is in touch of his hands.

[01:15:16] He lives at home now, but has dreams of getting his own apartment someday.

[01:15:20] We think about building a side by side like duplex or something

[01:15:25] so that he can live in his side and we can live on our side.

[01:15:28] And we'll probably put a door on the wall in the middle,

[01:15:30] like adjoining hotel rooms, and he can come and go through there

[01:15:34] or because he's still going to want me to make him dinner.

[01:15:37] In the meantime, he continues to touch the lives of those around him,

[01:15:42] which brings up that question again of why?

[01:15:45] If Noah was born without Down syndrome,

[01:15:49] would he have touched the hearts of others in the same way?

[01:15:52] Would he have been elected prom king at the school or made the news

[01:15:56] because both football teams were willing to throw away conventionalism

[01:15:59] in order to simply bring joy to a waterboy or a hydration specialist?

[01:16:03] Sorry. During the final high school game of the season,

[01:16:07] would people have cared about his reaction to his college acceptance letter?

[01:16:12] But, you know, maybe that's just not a fair question to ask

[01:16:16] because that's not how Noah was born.

[01:16:19] He was born who he is.

[01:16:21] And so his life and the events in it have played out the way they have.

[01:16:25] There is no alternative.

[01:16:27] Some people like, oh, like, do you ever think about how things

[01:16:29] would be different if he didn't have?

[01:16:30] And I'm like, no, because it's just my life.

[01:16:33] Like, I don't know.

[01:16:34] I give him crap like any other sister would.

[01:16:37] You know what I mean?

[01:16:37] Like, I don't know.

[01:16:39] I just don't think anything.

[01:16:40] I don't treat him any differently because he has a disability.

[01:16:43] Noah makes me want to be a better person.

[01:16:45] And every time I see him, it's lots of hugs.

[01:16:48] I think the girls

[01:16:51] would have been extraordinary people.

[01:16:54] But I think with having Noah, they have learned a lot of things, too,

[01:16:59] about being the kind of person who can put other people first.

[01:17:03] They're not the kind of people who look for their own needs

[01:17:07] in just about any situation.

[01:17:09] Noah's youngest sister, Jana, is just beginning her career

[01:17:12] as a special education teacher.

[01:17:13] Special ed wasn't really on my radar until I got into it.

[01:17:19] And obviously having a brother with a disability

[01:17:22] just like totally helps me and gives me

[01:17:28] support and how to help others because I've gone through it.

[01:17:31] And Jill chose to be a social worker, not because she ever felt

[01:17:35] forced to help her brother growing up, but because she found fulfillment

[01:17:39] in doing it voluntarily.

[01:17:41] Because how could you not love and serve someone who loves you

[01:17:45] and finds joy in simple moments?

[01:17:48] He's a cool dude.

[01:17:50] He's nice to everyone.

[01:17:52] I don't know. He's just different, I guess.

[01:17:54] I don't know what makes him so different other than he's so uniquely him.

[01:17:58] He changes every moment of our life.

[01:18:01] And today, Kara remembers back to that day more than two decades ago

[01:18:06] when she was sitting in her office, having just hung up the phone

[01:18:09] with the doctor, left to face a diagnosis she never wanted.

[01:18:14] At the time, she had felt like the world was collapsing around her.

[01:18:19] What horrible, life-changing news.

[01:18:22] And, you know, perhaps she had been right about that, at least in part.

[01:18:27] In a way, everything since that day had been totally normal.

[01:18:31] But in another sense, it had been life-changing.

[01:18:44] Now, when Kara meets new moms who learn their own child is or will be born

[01:18:48] with Down syndrome, she sees things in a totally different light.

[01:18:52] I think a big piece for me is being able to come alongside some other moms

[01:18:56] who have a new baby and are scared to death to be able to say,

[01:18:59] I don't know what's going to happen between now and the future,

[01:19:03] but you're going to be OK. And

[01:19:07] I think that helps to see someone who feels like this wasn't a tragedy.

[01:19:13] They are because it never was.

[01:19:35] Special thanks to the entire Van Voren family for sharing their story with us.

[01:19:39] There are some people who just give you good vibes when you talk to them,

[01:19:43] and they are those people.

[01:19:46] If you know anyone who would be uplifted by hearing about Noah,

[01:19:49] please don't hesitate to share this episode with them.

[01:19:52] Our goal is to cut through the darkness out there with stories of hope

[01:19:55] and goodness. And if you really feel moved to, you can, of course,

[01:19:59] leave us a five star review or support us on Patreon.

[01:20:02] In fact, I've said I would read comments from patrons in the $10 tier.

[01:20:06] And Alex Price wrote about episode one, quote, Whoa, crazy story.

[01:20:11] I love how it's only until way after it's all happened that he realizes he can't

[01:20:15] remember the individual that set him on the lifesaving path.

[01:20:18] We likely all have these types of angels in our lives and we don't even know it.

[01:20:23] Indeed, Alex. Indeed.

[01:20:26] Oh, and in other news,

[01:20:27] we did find out the positivity won two awards at the PopCon podcast competition.

[01:20:33] We entered the family category as well as the religion and spirituality

[01:20:37] category, and we won the top prize for both.

[01:20:39] So we are excited about that. Of course,

[01:20:42] couldn't be possible without any of you. And finally,

[01:20:46] we wanted to offer our love and support to the family of Joanne Rushton.

[01:20:49] She's the amazing woman I interviewed for episode five about how she and her

[01:20:54] husband Jack had lived this fulfilling life.

[01:20:57] Even with Jack having quadriplegia,

[01:21:00] Joanne recently passed away from the effects of ALS and I will miss having

[01:21:05] her as my neighbor,

[01:21:06] but I do take comfort in the belief that she has been reunited with Jack once

[01:21:11] again. And of course, to all of you,

[01:21:14] thank you for your generous support, for your patience,

[01:21:18] for how long it took me to get this episode out there.

[01:21:20] And always remember you're worth more than, you know.