The Table Podcast

Ministering to Parents of Children with Down Syndrome

In this episode, Dr. Darrell L. Bock and Rick Smith discuss ministering to people who care for children with down syndrome.

Timecodes
00:15
How Smith founded Hope Story
06:17
Why Smith founded Hope Story
10:09
What does Hope Story do?
15:16
Ministering to parents of children with down syndrome
20:51
How do Hope Story advocates minister to physicians?
23:30
How can we help mothers of children with down syndrome?
32:33
How does Hope Story support parents?
35:49
Reasons to support children with down syndrome
39:53
What Smith learned from ministering to parents of children with down syndrome
42:14
Helping people who have a sibling with down syndrome
Resources Hope Story
Transcript
Dr. Darrell Bock
Welcome to the Table where we discuss issues of God and culture, and we are really privileged today to have Rick Smith who has probably one of the more unusual ministries that you are going to hear about ever on The Table. So, Rick, I’m going to let you introduce the Ministry and what’s it’s focused on. And we’ll just go from there.
Rick Smith
Sure thing. Well thanks, Doctor Bock, for having me on The Table Podcast. I’m really encouraged by all that you guys do here, and just you. I was in your class years ago, so it’s really cool to be across the table from you.

So my story basically is – well let me back up. Let me tell you about the Hope story. So our Ministry is called Hope Story. And so, we have someone with Down syndrome, which we’ll talk about a little later. And what your listeners may not know is that, about 67 percent of children prenatally diagnosed with Down syndrome are aborted.

So let that sink in. Every time you’re out in public and you’re at the mall and you see someone with Down syndrome, there’s at least two other people that you don’t see because their life was taken away from them. So as a believer you say, “Hey. How can I do something about that? how can I help rescue some of those babies whose lives are being stripped away?” And so, we started an organization called Hope Story. And the idea from Hope Story is that, we want to connect every OBGYN in America to a family raising a child with Down syndrome. Yes, sir.

Dr. Darrell Bock
And how long have you – and this is a pretty new ministry, I take it?
Rick Smith
Yeah. So we actually had the idea about six years ago. It was funny. I actually was graduating Dallas Seminary, finished up my ThM here. And around that time my wife and I — that was a little over five years ago…we had this idea about Hope Story, and we bought the domain. I went on staff at a large church here in the area, got comfortable. Never really did anything with Hope Story. And then finally around December of last year – December of 2017 – we started taking steps to make Hope Story a reality. And then May first of 2018, transitioned off-staff at this church; and now this is our main thing.
Dr. Darrell Bock
So explain how Hope Story came to be.
Rick Smith
Sure thing. Well my wife is a pediatrician. And so, she’s a medical professional. And one thing that many people may be surprised to learn is that, a lot of medical professionals don’t receive training in medical school – or not much training – on how to deliver a diagnosis like this to a family. To top that off, my assumption is most medical professionals don’t have a personal relationship with anyone with Down syndrome. So you’ve got little training, no personal experience. But yet you’re delivering this life-changing news to a family.
Dr. Darrell Bock
Mm-hmm.
Rick Smith
And so, you think, “How is the world can we help these doctors, these medicals professionals, and how can we help these families getting this life-changing news? Because, Doctor Bock, we have a sever-year-old with Down syndrome. And we had a really negative experience. When our child was born, our OBGYN left the hospital. She didn’t even come and talk to us. She left, came in the next day. One of her first words to us was, “I’m so sorry,” and then went on to prescribe my wife anti-depressants.

And so, if you can imagine…we’re fortunate that we have a faith in the Triune God. But a lot of people don’t. And when your medical professional walks in the room, doesn’t lead with congratulations – leads with, “I’m sorry,” and, “Do you want anti-depressants,” — that affects you. And we say, “Hey. How can we help change that?” So we want to solve those two problems. We want to help train medical professionals, and we want to help medical professionals learn about Down syndrome.

So we want to connect medical professionals to families raising a child with Down syndrome, so that when they have a patient that has a Down syndrome…whose child has a Down syndrome diagnosis, they can connect their patient to a parent a little further down the road who can say, “Hey. You can do this. I’ve been there. You have a friend in me.”

Dr. Darrell Bock
So when this diagnosis was presented to you, you said she began with, “I’m sorry,” and prescribed with anti-depressants. Did she then go on to explain why it was, or did she still beat around the bush a little bit?
Rick Smith
No. So what had happened was, she left the hospital – our OBGYN left the hospital — and then they told us they were giving our son a bath. Hours went by, and I remember thinking…it was our first son. I was in seminary. My wife was in medical residency. This wasn’t supposed to happen – this sort of thing didn’t happen to us. This happened to other people…as a pastor, this happens to people in your congregation that you go and love on. Not you. And they kept saying, “We’re giving him a bath. We’re giving him a bath.” What they were doing, they were stalling while they were calling our pediatrician to come to the hospital and break the news to us. So she came in, told us the news so that she didn’t have to tell us the news. Yes, sir.
Dr. Darrell Bock
Ah, interesting. Ah. Wow. So she basically handed the ball off to another doctor.
Rick Smith
Handed the ball off. And what we want to tell OBGYNs is, “Hey. This is” – we’ll get into this a little later, but, “This is a child. That’s a human. Congratulations.” Any time somebody has a baby, the appropriate response is, “Congratulations,” regardless of how many chromosomes they have. It’s a child. It’s a human being. And we want doctors to know, “That’s a child,” and you lead with, “Congrats,” not, “I’m so sorry.”
Dr. Darrell Bock
So this was something that was discover, I take it, with the birth.
Rick Smith
Yes, sir. Postnatally.
Dr. Darrell Bock
Oh, wow.
Rick Smith
Yeah. So you can imagine we were surprised. I was – Noah was born December fifteenth. So in Dal Seminary world, that’s prime time. You know, it’s busy world. And that threw us for a loop. You know, that really threw us for a loop.
Dr. Darrell Bock
So I take it your Ministry might – I may be over-simplifying…three levels to it. The parents, the child and the doctor.
Rick Smith
Yeah. So we really cater to three folks. Medical professionals, we want to help train, resource and equip them. Parents raising children with Down syndrome, we want to help train and resource them so that they can use their unique story to help other people; and then we want to help families that just received a new diagnosis, and we want them to know, “You can do this. There’s never been a better time in the history of the world for a child to be born with Down syndrome – the resources we have today, and what we know about them, how to help them. So medical professionals, parents that have a child with Down syndrome and then parents receiving a new diagnosis. Those are our three main groups.
Dr. Darrell Bock
Interesting. And I’m assuming – I may be wrong – that you have some statistical awareness of how common this condition is, et cetera?
Rick Smith
Yeah. So there’s about 6,000 children born every year with Down syndrome, and there’s about 12,000-plus children every year that have had a prenatal diagnosis that are aborted. So 6,000 children that are born every year, and then about 12,000-plus that we don’t see because their life was taken away.
Dr. Darrell Bock
Is that a percentage…do you know what the percentages of birth that turn out to be Down syndrome?
Rick Smith
That, I don’t. I know 67 percent of children prenatally diagnosed are aborted. So you just do the math backwards. The other, you know, 20, 30 percent. Whatever that would be would be the number of children born.
Dr. Darrell Bock
So your situation’s a little different, in that, there was no choice was to be made because the child was born.
Rick Smith
No choice to be. But you and I both know as believers, and knowing that that’s a child, that it wouldn’t have changed anything for us. But it does change things for a large majority of people in our culture.
Dr. Darrell Bock
Mm-hmm. Interesting. Now you were sharing with me earlier a little bit of a story about how much pressure some people are put under in the midst of this when there is a prenatal diagnosis, and I take it that’s part of what you’re concerned about as well.
Rick Smith
Yeah. So there’s a story on our blog — a friend of ours who we recently met online who’s up in the DC area — and we shared her story on our blog, Hope Story Blog, about when she received her prenatal diagnosis. And I don’t think a lot of your listeners or even viewers may even know this happens. But their OBGYN, who’s supposed to be an advocate for life based on the profession they’re in, asked her several times, “Is this what you want to do,” and implied the option or alternative would be that you abort your child. And she continued to tell her medical professional — who is the authority figure in the room — “This isn’t what we want to do.”

And there was even a point when her husband wasn’t in her room that the medical professional basically cornered her in this room and said, “Are you sure you want to do this?” And then, alluded to the fact that this particular medical professional had an employee on his staff who was very Catholic – whatever that means – and that she aborted her baby. And so, she basically said, “Hey” — she changed OBGYNs. And she said, “Don’t ever imply that to me again.” And I think people might be surprised to learn, that situation isn’t uncommon.

Dr. Darrell Bock
Mm-hmm.
Rick Smith
Women who have this prenatal diagnosis are often-times not encouraged by their medical professional to bring this child to full-term. And we in turn…our culture have basically exterminated, you know, over half of a population of a people group. I mean, it’s a tragedy. And so, we got to go, “How do we reach in and help these children be born?”
Dr. Darrell Bock
Okay. So how does your Ministry work?
Rick Smith
Yeah. Great question. So there’s several things that we do. The first is, we sign parents up that have a child with Down syndrome. We call those parents Hope Advocates. And so, a Hope Advocate will be able to come to our website, hopestory.org, fill out some information. They’ll upload a photo of their child, tell some information about their child. We send them what’s called a Hope Kit. And a Hope Kit has lots of information in there; one of which are these really great cards that we make, called Hope Announcements, that they will give to their OBGYN that basically helps their OBGYN learn about a child with Down syndrome.

So it’s a picture on the front. On the back, some of the highlights about that year. And they’ll just go into their OBGYN office during a normal appointment. They don’t have to, you know, go past the secretary or anything. Just when they go in for their normal appointment, they just say, “Hey. I’m a Hope Advocate with Hope Story. I have access to training,” so we want to train those Hope Advocates on how to have a tough conversation.

And then they give ’em this card and they say, “This is my son.” And then they give them a business card and they say, “If you ever have a patient that has a Down syndrome diagnosis, you can give them my card. 24/7, I’m available to answer my phone and be a resource to your patients. Free of charge to the medical community. I’m a free resource to you.

Dr. Darrell Bock
Interesting. So you’re providing support to the doctor with almost, what, an empathy group or something like that so that someone who’s facing up to the situation can have someone talk their way through it who’s been through it?
Rick Smith
Yeah. Because, you know, a lot of people, Dr. Bock, are not connected to a church. They’re not connected to a community of people. So when they get this news like this, they don’t really have anyone in their life that comes around them through a Christian-world view and says, “Hey. You can do this.” I mean, you and I know when something like this happens – God is sovereign over that. God allowed that to happen, and we can trust His plan.

But I think the majority of our culture, they consider that, “Oh, man. This is a mistake. This is a problem. I’ve got to fix this problem. Where was God in this?” And then they make the decision that seems right to them; which is, “Hey. I’m not that far along in my pregnancy,” because they can detect Down syndrome really nine to 12 weeks along. So you probably haven’t even told anyone you’re pregnant yet. And in your rational mind you go,” I can eliminate this problem – so-to-speak – and then just try to have another child.”

Dr. Darrell Bock
Interesting. So they can test for this in the early pregnancy and discover that it’s coming. Which begs the question, how did they not know in your situation?
Rick Smith
You know, for us we did not do that testing. Because for us — nothing against anyone that does use prenatal testing because I think there are appropriate uses for that…but for us as Believers, we said, “Hey. It’s not going to change anything for us. You know, that’s our child, our son or our daughter. And so, no matter what happens we’re going to love that child.” So for us there was just no reason to even do that-
Dr. Darrell Bock
So I’m curious about the testing part of this, then. So is this a test that you request, or that comes and you can refuse? And is it just looking for Down syndrome, or is it just seeing the condition of the developing child?
Rick Smith
Well that’s a great question. So I think there are different thoughts on prenatal testing. You know, I think what often happens is, a couple is pregnant…the wife becomes pregnant and the OBGYN presents it as, “Would you like to know the gender of the baby?” So you say, “Sure, I would love to know the gender of my baby at 10, 11 weeks along.”
Dr. Darrell Bock
So I can decide whether to buy blue or pink, right?
Rick Smith
Yeah, blue or pink paint. But what they often don’t lead with is, “By the way, we’re testing for these quote-unquote ‘abnormalities’.” And so, you’ve got a couple that is really excited to learn if they’re having a Jenny or a Jack. But what they may not necessarily be prepared for is when their phone rings and their doctor says, “By the way, we also tested for this. And there’s a likelihood that your child is going to have Down syndrome.”

And so, where prenatal testing can become useful — one of the ways — is, if you’re a Believer and you know there’s no way in the world this test is going to affect if I have my child or not, and if you do have a child with Down syndrome it can allow you to prepare. It can allow you to prepare for any kind of medical things that may need to have happen. And so, I would say to someone, “If you’re going to have a prenatal test, and there’s no way that prenatal test is going to affect that child in the womb I can be okay with that. But if you’re getting a prenatal test because you want to eliminate the life in the womb because of something that test is going to give you, I have a big problem with that.”

Dr. Darrell Bock
So, you say you’ve got a seven-year-old. Is that right?
Rick Smith
Yes, sir.
Dr. Darrell Bock
And my guess would be that there are different levels of intensity of Down syndrome. Am I right about that, or is that-
Rick Smith
Yeah. So I would say, like anything, there’s a range of how that affects you. Not just intellectually. But some children with Down syndrome have heart issues and have to have heart surgery pretty quick upon birth. Some children with Down syndrome have varying levels of intellectual challenges. So yeah, that can be arranged. But what I would tell parents…my mom had four boys. And there’s a range of us. You know, any human there’s a range. And so, same applies to a child with Down syndrome.
Dr. Darrell Bock
And what is it that parents have to prepare for? And let’s assume that I get a diagnosis that my child is going to have down syndrome. What is that going to demand of the parents?
Rick Smith
Yeah. So that’s a great question. And here’s what I tell. We have three kids, one of which has down syndrome. And they all have unique challenges, and they all have – they’re all different because they’re made in the Imago Dei, and God created each of those individual children with unique personalities, unique gifts, unique challenges. And so, what I would tell a parent that just received a diagnosis is, “Number one, you need to be connected to a local body of believers. You need to have” – not just friends, but you need to have…you know, when you and I say community, we don’t mean they get their truth from Oprah. You know?

What we mean is, man, God’s word as their guide. And so, you want friends around you that are going to go, “Hey. Let me point you to God’s word, because we know God can see you through this. We know God’s going to get you through it.” So, number one, you want a good group of friends who are rooted in God’s word. And that’s their guide. But then two, if you’re in a town where that has a local down syndrome organization it’s helpful to be connected to that group that can help you to kind of navigate…’cause your child’s probably going to need physical therapy, speech therapy, occupational therapy.

And so, you’re going to want to know, what are the options in your local community to help your child with that? And then schooling, things like that — but one day at a time. You know, you don’t have to worry about, “What’s my child going to do in high school,” when they’re a newborn. Just take it one day – someone we know, a wise man, said, “Don’t worry about tomorrow. Tomorrow’s got enough trouble of its own.” So just take it one day at a time. But you do want community around you, people around you, who can encourage you with the truths of God’s word when life gets difficult.

Dr. Darrell Bock
So support is very, very important in dealing with the help that really you’re going to need in dealing with this. Is there counseling supplied through your Ministry? Or is it strictly a connection and group, kind of, association?
Rick Smith
Yeah. That’s a great question. So our number-one goal is to really help families that are receiving this prenatal diagnosis. And so, most major cities have a local down syndrome organization. So in Dallas, it’s the down syndrome Guild of Dallas. And most major cities have a local organization. And so, for us we don’t want to be the local support group. We want to – candidly — get babies out the womb, and to be born. And so, what we really want to do is even really help, even come alongside local groups and say, “Hey. Your customer so-to-speak, our families of children with down syndrome.

But about 60 percent-plus of your customer base never make it out of the womb. So we want to come into your community, help train your parents, help equip your parents.” Because it is appropriate to train them and equip them. Because, my friend here, John Dyer, that works at the Seminary — he was the first person I called when we found out Noah had down syndrome. And I remember going into the hallway out in the little lobby area, picking up the phone. He answered the phone. And John had no idea. All he knew is, we were going in to deliver a baby.

So he answered the phone, “Hey.” And I’m on the other end bawling. And so, John, he loved me the best he can. But what we want to try to do is help equip people…that when your phone rings, what do you say to someone on the other end and kind of walk them through? And then we want to help hand those parents off to a local support group, support organization who can walk with them as their child grows up.

Dr. Darrell Bock
So the local support organization will be the people that have the counselors and that kind of thing? Or do they refer?
Rick Smith
Well, I’m not – we never went to counseling. Personally I think if you’re — there was no counseling we needed for us. I mean, as far as getting us through. For us, when Noah was born we just said, “Hey, let’s roll with this.” I mean, this is what God is sovereign. And He is not only sovereign, but He is good and everything He puts into our life is for our good and His glory. And so, when this happened, yeah it was a surprise. But also our faith as a believer said, “Hey. We can trust God in this. And so, let’s roll and let’s see what God’s got in store.” And so, yes sir.
Dr. Darrell Bock
And how does the support for the physician’s work? I mean, I know you’ve got these Hope Advocates. Is there anything else that gets done for them that is part of the Ministry?
Rick Smith
Yeah. So when a Hope Advocate goes into a local – their OBGYN – some of the materials they give them is a “How to Deliver a Down syndrome diagnosis,” document that we’re going to put together. On the back is preferred language. And so, we want to help train – because an OBGYN probably only gives that diagnosis zero to maybe two times a year. So it’s not a common thing. So we want to help them with, “Hey. Here’s some language to use. Here’s how to deliver that news.”

For instance, very basic things like, “You want to say congratulations, not, ‘I’m sorry.'” And it’s not a knock on OBGYNs…even in the Christian community. We may just not know what to say to a friend in our own life who had a child with Down syndrome. Do you get a Thank-You card, or do you get an I’m-Sorry card or do you get a Congratulations card? Yeah. It’s congratulations that is always in order when a life is born.

Dr. Darrell Bock
So your wife, you said, is a – well, she was trained to be a doctor. Am I right about-
Rick Smith
She’s a pediatrician here in the area.
Dr. Darrell Bock
She’s a pediatrician?
Rick Smith
Yep.
Dr. Darrell Bock
So she knew what she was dealing with.
Rick Smith
Yes. I did not. I remember actually saying to Abby, when Noah was born – this was horrible – but we have someone with special needs, so we can say this…is he going to be like Christopher Reeves?” And she said, “Christopher fell off a horse, Rick.”

And I kind of chuckled. I just didn’t know. I had no experience with anyone with down syndrome other than Corky on, “Life Goes on,” from years ago. And I just didn’t know anything. And so, as we — I mean, I had questions. Was Noah – you know, every dad has these dreams of what their child’s going to be like. Right? You’re going to be in the front yard throwing the…playing catch with your boy. And I like to go to New York city, and you’re going to take your boy to New York City.

And I remember wondering, “Is Noah going to do all these things? Is he going to do all of these things that a dad longs to do with his son?” And so, yeah. Those were some of my initial thoughts. And as Noah grew up, and has continued to grow up, those concerns have vanished because Noah has a lot more in common with every other kid than things that are different.

Dr. Darrell Bock
So this may seem like an odd question, but I think it makes sense. What advice do you give to people who are friends of people with Down syndrome? ‘Cause I can see that being an awkward situation in some ways. Family get-togethers, that kind of thing. What kind of advice do you give to people who know people with Down syndrome?
Rick Smith
Thank you for that question, because I think that’s just a normal question to ask. Right?
Dr. Darrell Bock
Yeah.
Rick Smith
Because if you’ve never been around anyone with Down syndrome before, and you’re at a function and there’s someone with Down syndrome…what’s appropriate? What’s acceptable? And here’s what I’d say. A family that has a child with Down syndrome – or really any disability – they don’t mind talking to you about it. So I think an appropriate thing for anyone watching this — whether it be a friend, family member or just a pastor at a church that has someone in their congregation that has someone with a disability – is just ask.

You know, find their parents, or them depending on…some people with special needs can vocalize more than others. But just ask. “Hey. Tell me about what it’s like raising a child with Down syndrome. Tell me about what your day-to-day is like. Tell me about how this changes things in your family dynamic.” And then, we have a community group through our church, and we’re with them a lot. And it’s really great to see the way that their family, their children interact with Noah. And they just treat him like one of the other kids.

And Noah’s in public school, and it’s been really great to see the way that children treat Noah, invite him to birthday parties. And so, just treat him like any other child. And then ask their parents. Don’t be afraid to ask, “Hey. Tell me about Down syndrome.” It would encourage me if someone was to say, “Hey. I don’t know anything about Down syndrome. Tell me what that’s like raising a child with Down syndrome. What kind of challenges does Noah have? And let me talk about ’em.”

Dr. Darrell Bock
So if someone wanted to know about your Ministry, where would they find out about it?
Rick Smith
Yep. So Hope Story. That’s our website, hopestory.org. And then also on our Facebook page — we have a Facebook page which is Hope Story — Twitter, Instagram, we have a newsletter that they can sign up for. They can send me an E-mail, rick@hopestory.org, if they’re interested in learning more…if you’re a family of a child with Down syndrome, if you’re a medical professional watching this or if you’re a church that is curious about, “How does our church love and care for people with special needs?” We have a child with special needs, and I think our church does a really good job at helping those kids become part of the body. And, you know, they can shoot me an E-mail. I’d love to talk to ’em more about that too.
Dr. Darrell Bock
And so, what is your Ministry day like? How does your Ministry roll?
Rick Smith
Man. That’s a great question, Doctor Bock. So I was on staff at a Mega Church in Dallas — and we were talking about this before we started filming — and I was there for over five years. And then now, you know, we’re boot-strapping this. We’re fund-raising and all those things. And so, it’s a completely different animal, because when you’re on staff at a large church there’s so many resources, other folks on your team. And when you’re starting a new organization, you know, I’m working out of my house. And I might have my four-year-old in the living room while I’m trying to work on a-
Dr. Darrell Bock
That lowers the overhead for the operation.
Rick Smith
Yeah, lowers the overhead. [Laughs] My office is the DTS library over here, you know. [Laughs] I was just in there before we started filming, and it said, “What are you here for?” And it was like a blank. And I was like, “Working. Getting some work done on your free Wi-Fi.” But no. You know what? We’re starting out. So I’m doing pretty much everything. So sending an E-mail – we have a board of directors and some other folks that are helping out…but day-to-day stuff, I’m the guy. And so, it’s sending E-mails or it could be talking to an organization that we want to possible work with, or do some things with. So you’re literally doing everything, pretty much everything. So it’s not glamorous. You’re doing a lot of stuff behind-the-scenes that nobody ever sees.
Dr. Darrell Bock
Now another question that may be pretty transparent given the topic is, what advice do you give to churches about how to help be a community for people who are in this situation?
Rick Smith
Yeah. That is – thanks for asking that. And so, here would be my answer. Every single person in your church is made in the image of God. They have value, they have purpose, they have an ability to serve and contribute to the body. And so, you have to look for ways to include those – everybody that’s a part of your community, in your community. So in other words, if you are a church where you take people with special needs and put ’em in the basement and give them animal cookies and punch for 45 minutes, that’s not okay.
Dr. Darrell Bock
Mm-hmm.
Rick Smith
You need to find a way to include them. At our church, where we go to at Watermark, we have a Ministry there called Kaleidoscope. And so, Noah is in a typical classroom with all of his other friends. And we have a – he’s a buddy with him that is a, you know, college-age guy or…he’s a buddy with him that – or girl – who hangs with him and helps him when he needs help, helps take him to the bathroom. But Noah is integrated with the other children and integrated with the church body, and as Noah gets older I want Noah part of the church community. I want Noah serving and contributing and I want Noah to be an active member of the church.

And so, all that to say, if you’re a church you need to find ways to include them. Because really, Doctor Bock, I think what we can do sometimes – unintentionally – is say, “Hey. We’re up here.” Our IQ might be 100. Someone like Noah’s might be 50. Therefore, we’re up here and Noah’s down here, and he’s someone we have to” – he’s almost like a service project for us. But that’s really a mis-number, because nowhere in the scripture you and I the measuring rod of anything.

God is the measuring rod. And so, compared to God we’re all intellectually disabled so-to-speak. So we need to not look down at the Noah’s of the world as someone who is a Ministry project for us, but someone who is our Brother and Sister in Christ, and say, “Hey. You’re part of the community of Believers here, so let’s all do this together.”

Dr. Darrell Bock
Now if your wife were here, what kind of advice do you think she would give to a mother of a Down syndrome child?
Rick Smith
I think she would say – first, I got to say, my wife is…it’s important who you marry. You know, I think both you and I would say that. The who you marry is important. And there’s no one on Earth that I would rather raise a child, I know, other than my wife. I mean, she is so loving and kind. And I think she would just tell moms that, “You can do this,” that, “It’s okay to cry. It’s okay to mourn the loss of the imaginary child.” Because we all make these kids up in our mind when we’re pregnant of what our child’s going to be like. And when you have a child like Noah, you have to kind of mourn the loss of that kid that you made up in your mind.

And so, I think she would encourage them, tell them, “It’s okay to cry, the emotions that you feel are normal. But you can do this. And you will love that child like all your other children.” You know, Doctor Bock, I remember – sometimes you see guys that speak at a church, they speak in chapel and they have this really crazy story. And you’re sitting there and they’re saying, “This is so great. I wouldn’t change anything. God is great.” And you’re sitting — people have cancer, people have all kind of things. Joni Earickson Tada, you know. You hear her story and you’re thinking, “Does she really mean that? Does she really believe God is good? And even in her challenging circumstances?”

But maybe – especially with a young seminarian – maybe you’re never walked through anything like that personally. Having a child with Down syndrome, I can say with certainty on the other side of the equation that — on the other side of the counter — that God is good, and His plan is good. And in life you’re going to have curveballs thrown at you. You’re going to have things that come out of left-field that you never see coming.

And in those times I can say with certainty God is good, and His Grace is sufficient for you, and all of these curveballs in life – and you’re further along on the Christian journey than I am. And as you look back at the curveballs in your life, you can go, “Man. God was behind…when I wanted to go right, and God had me go left there was a purpose in that.” And so, I can encourage people in that as
man, God knows what he’s doing with your story.
Dr. Darrell Bock
And do you provide support for the parents? I mean, is that part of – I guess what I’m asking is, do you develop, like…a fellowship group might not be the right word. But some type of support for the parents who have a Down syndrome child?
Rick Smith
Yeah. So two things. For the Hope Advocate – so families that have a child with Down syndrome that sign up and say, “Hey. We want to become an advocate.” — we have a private Facebook group. So already right now our son Noah has a Facebook page with over a quarter of a million people that like his page.
Dr. Darrell Bock
Oh, wow.
Rick Smith
So he has a very large social media following. We also have a Facebook closed group with thousands more parents, thousands of parents. I say more, but a lot of those parents are overlapped. But thousands of parents. And then Hope Advocates will also have access to a private group where they can build community, share pictures, encourage each other. But we really think it’s important that you get connected to a group in your local community because we’re in Dallas, Texas.
Dr. Darrell Bock
Mm-hmm.
Rick Smith
And if you have a child with Down syndrome, and you’re in New York City you need some friends in New York City that can sit across the table from you – no pun intended – and get a meal with you, grab a cup of coffee with you, ask you how you’re doing. And so, as much as I’m a fan of technology and connecting in groups online, there’s just something about someone being able to give you a physical hug that technology cannot replace. So for us it’s really important that people get connected to a local group in their community and a local church who can come alongside them too.
Dr. Darrell Bock
Let’s say I have a child with Down syndrome and I’m just hearing this for the first time, and hearing about it. How do they get in contact with you in order to gain some of those support and Ministry that you provide for people?
Rick Smith
Yep. So again they can just jump on – so hopestory.org. And when you go there, there’s three boxes that’ll say, “Existing parent, medical professional, or I Just Received a Diagnosis.” So whichever one that describes, they can click on that box. There’ll be information there pertinent to them. There’s a contact form on hopestory.org — I read all those, so those all come to me.

So if you click on that, send me a message…if you’re a parent of a child with Down syndrome, medical professional or if you’re just passionate about life and you’re like, “Man, I want to learn more about how to get involved,” you can go there. Or you can just shoot me an E-mail, rick@hopestory.org. and we’d love to help you. And if you are listening to this podcast — maybe you came across it on YouTube or through Itunes — and maybe you just got the news that you’re going to have a child with Down syndrome and your OBGYN doesn’t have an advocate, you can come to our website, click on that contact form and we would love to just follow up with you, even if you’re just in another state, and just try to help you get connected with someone in your area.

Because, there are people in your area. Because you may feel like, “I’m all alone. No one knows what I’m going through,” but I got to tell you there are thousands of people that have a child with Down syndrome that want to come around you, help you, support you, encourage you and just let you know that, “You can do this.”

Dr. Darrell Bock
Okay. So I’m actually out of questions. Anything that we haven’t mentioned that’s worth mentioning?
Rick Smith
Yeah. So one thing that I would say is the why behind all this. You know, why do we do this? Why are we advocating for these children? And I think that’s important, because I think Christians know that being involved in a pro-life movement seems like a really good idea. I think if you were to ask most Christians, “Hey. Do you want to help save the lives of the unborn,” people would say, “Yeah, I want to do that.”

But then you look at the ways Christians typically do that, Doctor Bock, is they go picket abortion clinics, or stand outside places and scream at people. And I think you and I would say that’s not a really-effective way to help people…is by screaming at them, throwing bricks through their windows with crosses on ’em, or whatever you might do. I don’t know if people really do that. I hope not. [Laughs] Maybe at your church.

Dr. Darrell Bock
I hope not too.
Rick Smith
But that’s just not an effective way. We know that relationships are so important; building a relationship with someone. So we do this because we think helping people build relationships with other people, building relationships with their medical professionals, building relationships with other parents — that’s really important. And we believe that every person is created in the image of God; that it doesn’t matter. Because your worth, Doctor Bock, isn’t tied to what you can do or what your IQ is or what your contribution to society is.

Your worth and your value comes because you’re made in the image of God, and you are made in the image of the Imago Dei. No matter how many chromosomes you have, no matter how many limbs you have, your value is in who you’re made in the image of — which is God. So for anybody watching this, you need to know that every single one of these children…they are made in the image of God, they have value, they have purpose and they’re loved by God. And God also sent his son to die for them and values them.

So that’d kind of be my overarching thing…is, man, these children – and not just children with Down syndrome. Anybody you see, no matter if they live to be zero days old or 100 years old. They’re made it the image of God, and they have value. And it doesn’t matter if they’re zero, it doesn’t matter if they’re 100 in a nursing home somewhere. People have value, and God loves them and cares for them. And by that, we should too.

Dr. Darrell Bock
So what I’m hearing you say is that there is a…this is part of loving your neighbor, and God’s sense in scripture is that people who are needy, and people who have needs, people who are often marginalized, are part of the people that we should be concerned about in the church.
Rick Smith
Yeah. We should care about them. And the scripture also talks about being a voice to those who don’t have a voice, and for speaking up for those who can’t speak. And I can’t think of any…I can think of very few people who don’t have a voice as babies in the womb. And when I say children with Down syndrome – there’s 12,000-plus children with Down syndrome aborted every year, prenatally diagnosed with Down syndrome aborted every year — there’s thousands and thousands of more children that are just aborted that don’t have a prenatal diagnosis.

You know, abortion is one of our nation’s worst tragedies. And I think as believers we’ve got to stand up and say, “Hey. We got to care about these kids.” And families. You know, if you have people in your church that are pregnant, your church also should step up and go, “Hey. We’re going to help you. We’re going to care for you.” Not just deliver that baby, but when you had that baby we want to come alongside you, help you, care for you, love you, help you point your resources-

Dr. Darrell Bock
The journey just started with the birth.
Rick Smith
The journey just starts with the birth. Yeah.
Dr. Darrell Bock
What are some of the things you’ve learned – I mean, you’ve been around this now in your own family for seven years. What are some of the things you’ve learned as a father and as a parent?
Rick Smith
That’s a great question. So again, we have three children. And I think that one is – we touched on this earlier – that God is so in control of our life. Every detail of our life, God is in control of. And he writes a better story for our life than we can ever write. Because I would have — there was never a day, Doctor Bock, where I sat down, broke out my bible, broke out my journal and said, “Dear lord, I pray that I would have a child with Down syndrome today.” Maybe some people do that. You’ve got probably some really-spiritual viewers out there. But I never did that.
Dr. Darrell Bock
[Laughs] Yeah.
Rick Smith
And I just never would have prayed for that. In fact, the night my wife was going in for a C-section because she had some blood pressure issues…and so, we knew we were going to go deliver Noah that day — I forgot what day it was. But we went to go eat the night before at a Mexican restaurant. I remember praying, and praying something along the lines like, “Thank you, God, that our child’s healthy, that our child doesn’t have special needs.” And you think about God hearing that prayer and going, “Rick, you have no idea what’s coming tomorrow.”

And so, now our prayers change. You know, in our other kids our prayer was, “God prepare me for whatever you have in store for me.” You know, “Prepare me for whatever my child might bring.” And so, to answer your question the number one thing I’ve learned is, God knows what he’s doing with our story. We can trust him. And then number two, that parenting a child…you have children, and parenting a child gives you such a small glimpse of God’s love for us.

You know, when you see your children you want them to be happy, and you want to give them good gifts and good things. You also have to discipline them. And you think about a loving father for us. You know, He loves us. He sometimes has to discipline us but delights in giving us good things, and He cares for us. And so, I think there’s such a model of God’s love for us that comes through parenting.

Dr. Darrell Bock
You know, one of the questions that strikes me as being a natural one is, how did – do you have older or younger kids in relationship to Noah?
Rick Smith
Younger.
Dr. Darrell Bock
Younger. So that’s even more interesting in some ways. So I was going to ask — l mean, I know kids have an instinct of being helpful, particularly if they’re older kids. I’m familiar with other families who have either Down syndrome kids or other kids with mental conditions that impact the way in which the family functions. And so, what have you done with your – how much younger are your kids, first of all? And then what have you done to help them understand what’s going on?
Rick Smith
Yeah. So we have a four-year-old and then we have, like, a 10-month-old. He’ll be one in October.
Dr. Darrell Bock
So it’s too early for him, in some ways.
Rick Smith
Yeah. But it’s interesting. So our four-year-old is – he hears us talking saying things. So the other day he said, you know…I was asking him like, “Hey. Sometimes is it hard for you to understand your brother?” And he said, “Yeah.” And he said, “When am I going to have” – I said, “Well, Noah has Down syndrome.” And he said, “Well when am I going to have Down syndrome?” And I said, “Well you’re not going to have Down syndrome.”

So I think we’re trying to help him understand. And, you know, he’s four. But I think helping him understand, “Hey. Your brother does have some things that are unique to him. But Noah also has more things in common with you than he has of things that are different.” And what’s been really cool is the relationship that Jackson – that’s our four-year-old – has with Noah, our seven-year-old. They really have formed a special bond. And Jackson will help him, Jackson will play with him. So it really has been a special bond.

And what I hope, Doctor Bock, happens is that by having a brother with Down syndrome, that that will affect the way our other two sons interact with people when they get older; that they’ll have a sensitivity maybe that I didn’t have. Or, you know, I hope that affects the way they see other people, as, “Hey. Even if you’re a little different than me, or unique to me, God loves you. God cares for you. And you have purpose and you have value,” and I hope they are changed by having, you know, someone in their life that has Down syndrome or special needs like Noah.

Dr. Darrell Bock
Yeah. The families that I’ve seen where there are older kids involved…it is amazing, the adaptability that the siblings bring to the family. And in many cases, the way in which they’re able to contribute, support to the family and to the process. It’s an amazing thing to see in many ways. And there is that special bond that often-times does develop for the child who’s – in some ways – having to sacrifice because of the amount of energy that sometimes it takes to care for someone who has special needs.

Well, Rick, I really want to thank you for coming in and talking with us about this. You know, it’s not a common topic, for sure. But we really appreciate, one, the nature of your Ministry and what you’re seeking to do; and secondly, for taking the time with us to help us understand a little bit about what it’s like to raise a child with Down syndrome, and the way in which you’re trying to help other people understand what journey is like.

Rick Smith
Thanks for making time to talk about this important topic. I really appreciate you giving us a platform to do so.
Dr. Darrell Bock
Glad to do it. And we’re glad you could be with us on The Table, and we hope to see you again soon.
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Darrell L. Bock
Dr. Bock is senior research professor of New Testament and executive director for cultural engagement at Dallas Theological Seminary. He has authored or edited more than forty books, including Jesus according to Scripture: Restoring the Portrait from the Gospels, Jesus in Context: Background Readings for Gospel Study, Studying the Historical Jesus: A Guide to Sources and Methods, Jesus the Messiah: Tracing the Promises, Expectations, and Coming of Israel’s King, Who Is Jesus?: Linking the Historical Jesus with the Christ of Faith, and Key Events in the Life of the Historical Jesus: A Collaborative Exploration of Context and Coherence.
Rick Smith
Rick Smith is the founder and president of Hope Story, a team of medical professionals and storytellers who help people tell their stories and share them with people that need to hear it the most. First, the organization helps medical professionals deliver hopefully stories to their patients. Second, they also help parents raising children with Down syndrome leverage their unique story to bring hope to parents whose child has received a Down syndrome diagnosis. Finally, Hope Story connects parents whose child has received a new Down syndrome diagnosis to parents who have a child with Down syndrome so that they can receive, encouragement, support, and hope.
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