Shauna Amick: Sarah has enriched my life and the lives of others in wonderful ways. Her life is meaningful and full of purpose. The hundreds of other special needs parents I’ve met along the way, they tell me they feel the same. The world is a better place because of our children.
End of Preview
John Fuller: Well, that’s Shauna Amick describing her beautiful daughter Sarah, who has Down Syndrome. Today on Focus on the Family, we’re going to hear about Shauna and Sarah’s remarkable journey and how God kept showing up in their lives. Your host is Focus president and author Jim Daly, and I’m John Fuller.
Jim Daly: John, I wonder how many people know that today, March 21st, is World Down Syndrome Day, and which is a day of celebration and global awareness officially observed every year by the United Nations since 2012. And this is a growing global campaign to advocate for the rights, inclusion and well-being in people with Down Syndrome. But ironically, uh, we completely disregard pre-born babies who have been identified with this particular disability.
Jim: It’s estimated in the United States that 67% of pregnancies with a Down Syndrome child and in abortion. 67%. And in some European countries, it’s as high as 90%.
John: That is really sad, and, um, I mean, any abortion is tragic. It’s heartbreaking that so many in our culture, though, are looking at these precious lives saying doesn’t matter, not valuable, even though these are babies created in God’s image.
Jim: Absolutely. It doesn’t mean there’s not hardship, there will be. But how do you become more like Christ right there within your own family? Here’s the thing John, God doesn’t make mistakes. There are going to be obstacles in, uh, a world that is full of sin and has fallen away from God. But we can quickly um, see those imperfections in someone with Down Syndrome or some other physical or mental disability. And maybe we judge them, or we pity them for the condition they’re in. But God often does his greatest work through our weaknesses, right? And, uh, where there is a mess, God has a greater plan of purpose that’s far beyond what we can imagine. And that’s been the experience of our guest today, and I’m looking forward to discussing this issue with her.
John: Yeah. Um, Shauna is an author, speaker and disability rights advocate. She’s the Director of radio marketing for Joni and Friends. The ministry founded by her good friend Joni Eareckson Tada, and Shauna is the mom of three, and uh, she’s a contributing author to a book we’re offering today called, Real Families, Real Needs: A Compassionate Guide for Families Living with Disability. And then Shauna has captured her own personal story in a little booklet, My Baby Has a Disability: Life Giving Questions and Answers. And you can learn more about these resources when you contact focusonthefamily.com/broadcast.
Jim: Shauna, welcome to Focus on the Family.
Shauna: Thank you for having me. I’m so happy to be here.
Jim: Yeah, we’re recording in Southern Cal, at our good friends here at Ambassadors Conference Room actually. It was nicer than to make this available to us.
Shauna: Sure was.
Jim: Uh, Shauna, I understand you’ve been a pro-life advocate for more than two decades and you also worked with pregnancy resource centers. By the way, let me get that unabashed plug for pregnancy resource centers. You want to get involved in your community, call them up and see how you might volunteer, help them, certainly support them financially. The PRCs deserve that kind of local support, and they’re in your community. I am almost sure that they’re there for you. So you were doing that and in 2005, your pro-life convictions were tested. How were they tested?
Shauna: Well, I uh, ended up being pregnant with my third baby and went in for what I thought was going to be that routine ultrasound where you get to find out if you’re having a boy or girl. And I’m confessing that was about the extent of my vision for the day. I wanted to know what color I was going to be painting the room when I got home. And as I laid on that table and the ultrasound technician took longer and longer to look at this baby growing inside of me, and then settled on my baby’s heart and stared at the ultrasound image of Sarah’s heart for close to 45 minutes. And with my untrained medical eye, I knew we had a problem.
Jim: Yeah, you didn’t know quite yet.
Shauna: I really had no idea what the problem was, but I knew that I had, I had had two children already. I knew we didn’t take this long doing an ultrasound, and I knew enough about the human heart to know that there were supposed to be four chambers in it. And Sarah had no chambers in her heart. It was uh, a circle with a little piece of tissue that would kind of float around every time my heartbeat. And I asked the technician, “When are you going to tell me?” And she said, “Oh, I’m going to have the doctor come in and see you.” And the doctor sat in front of me and told me that my baby had what was called an AV Canal Heart Defect. And that that specific heart defect was a red flag for Down Syndrome. She then told me about all the other markers that she saw through ultrasound, and immediately offered an abortion. And at that point, I couldn’t really speak, I just shook my head, no.
Jim: Let me ask you, though, in that moment when when a medical professional, I mean, obviously, you’re going through trauma,
Jim: and you’re getting all your fears confirmed and things you may have even had mommy’s intuition about, right? And then they say, yeah, we would highly recommend an abortion. What flows through your mind at that point?
Shauna: Hmm. Uh, this is going to sound ridiculous, but I was kind of sitting with my arms crossed and I literally pinched my arm. It just didn’t feel like reality.
Shauna: I don’t know that I could tell you in the moment. There were a whole lot of thoughts going through my head other than, no. But after the fact, very soon after I left the office, I just started praising God that I knew the truth of scripture, that all life is sacred. It was actually Psalm 16, that God gave me and carried me through the next five months of that pregnancy. Specifically, “The boundary lines have fallen for me in pleasant places, and I have a delightful inheritance.” And, you know, I would drive by. I mean, we were in the hospital all the time after that, throughout the rest of the pregnancy, I, it became a high-risk pregnancy. Uh, Sarah was born on a beautiful June morning and just quickly started dying as they told me because of her heart defect. And it would be six weeks until she was strong enough to have the surgery itself, and then another two months of staying in Children’s Hospital in Boston recovering. And so every day I would see other moms with healthy babies, no heart defect, no disability, and God would just remind me, the boundary lines have fallen for me in pleasant places to.
Jim: Yeah, but even in that, I mean, there is there’s that immediate faith response that you had, which was a good step in God’s direction. Did you at some point in that journey, begin to say, I’m not feeling close to the Lord? I, you know, did you have moments where you were struggling?
Shauna: I had moments of struggling with Sarah’s diagnosis. I certainly had a lot of fear, uh, that on this side, I think what was I afraid of, right? Um, but-
Jim: What were you afraid of?
Shauna: What was I afraid of? The unknown.
Shauna: And I think-
Jim: The difficulty of it,
Jim: … the challenge it would be. That seems reasonable.
Shauna: And I think even that is part of how our culture kind of indoctrinates us to think that people with disabilities are somehow less valuable because what would be there to fear in Down Syndrome? I can say that today. (laughs)
Shauna: 16 years ago, I was terrified. I didn’t know what this would look like. So, um, I’m grateful that it didn’t shake my faith. Um, it totally shook my core. I can say that, and I had a lot of questioning, uh, the Lord, why? Why would he do this to my baby? Why would he do it to me? And, um, three months later, after open heart surgery, after everything that she had to go through at, uh, in the queue and the Children’s Hospital, and I was finally told I could bring my baby home. I, uh, I said, well, I’m going to go for a walk before I put her in the car. That made everybody nervous. I don’t know if they expected me to come back or not. Um, but I had it out with the Lord. Can I say that?
Shauna: I said, what happened to the bread I asked for? Why did you give me the stone? And, uh, about four miles into my walk, I really heard the Lord say, you were asking for a stone. I gave you the bread.
Shauna: And it just about knocked the wind out of me and I, I walked in, I said, okay, I’m ready, I’m ready. Let’s go. I took my baby home. I set up her little hospital room right next to my bed and and we’ve been doing life together for 16 years now.
Jim: Yeah. And, but, uh, yeah, I so appreciate the vulnerability of what you were struggling with because, you know, women are listening right now who are maybe facing all kinds of things that are challenging their faith. It may be a diagnosis of their pre-born child and what’s happening in the fears of that and might be difficulty in their marriage. It could be a whole host of things.
Jim: So I do appreciate that honesty and to the blackness of your heart. We all have sin in our heart, right?
Jim: So we’re all going to have doubts and fears, that’s part of being in this life. But it’s so amazing when we choose faith in Christ, no matter what form that takes,
Jim: ’cause I really think it puts a smile on his face when we trust Him. You had a couple of experiences that really helped bolster you, what you called kind of the, I would call God incidences,
Jim: … the coincidences that occur. One was where, um, you were in a fast-food restaurant, and something happened. What was that?
Shauna: I was, yes, okay. Well, um, I had been crying for a good many weeks at that point, and I had my two older children, Veronica and Gideon. Veronica was six and Gideon was four, and we lived out in the boondocks. Okay, so there wasn’t a matter of getting in the or going out the front door and going for a walk to see people. I had been kind of housebound, uh, living out in the woods with these kids, and I just had a little bit of cabin fever and thought, okay, that’s enough crying for for now, and let’s pack up and we’re going to go do something crazy and go get some fries, right?
Jim: That’s crazy.
John: Junk food to the rescue.
Jim: Well, can I come?
Shauna: Oh, well,
Jim: I like fries.
Shauna: I packed up the kids and we headed into town and parked ourselves and got our our, you know, chicken nuggets and fries and just started being normal people for a moment. And, um, I don’t know if I lasted maybe 20 minutes and then I just, you know, had another episode. I looked out the window and just started crying again. And, um, this lady, all of a sudden, I can feel her hand on my shoulder, and she just tapped me on the shoulder. I looked up and she said, “Honey, I don’t know what what’s going on right now, but you know, I just want you to know it’s going to be okay. That my friend and I are praying for you, and we want you to know everything’s going to be okay.” Now, that would have been enough. But when she pointed to her friend, it was a young man with Down Syndrome.
Jim: Oh, my.
Shauna: And she had no idea. I mean, she knew I was pregnant. She could see that,
Jim: She just saw you crying.
Shauna: but she had no idea what I was crying over.
Jim: That’s amazing.
Shauna: I feel like,
Jim: It’s like the Lord was saying-
Shauna: … that’s that’s one of those, be careful how you entertain strangers, right? They could be angels unaware.
Jim: That’s so true. Another God incident was listening to the Focus broadcast?
Shauna: Oh my goodness. Oh yes, that’s when the Lord turned my car into this holy sanctuary.
Jim: What happened?
Shauna: Okay. Another day where um, and of course, this is, I lived in New England. It’s cold, right? So again, we’re not going for a walk. What can we do? I got to get out of the house. I packed the kids up. We’re going to go to the mall. Uh, this beautiful God moment where I look in the back seat as I pull into the mall parking lot and the two kids are asleep, right?
Shauna: Like that in itself, you know?
Shauna: And so I thought, well, I’m going to let them sleep. I’ll just listen to the radio. And here comes Focus on the Family. And you know, I’m not quite remembering word for word, but it was something, the intro was something like, um, “Have you been diagnosed with an adverse, or have you had an adverse diagnosis in your pregnancy? Well, stay tuned because this show is for you.”
Jim: Yeah, wow.
Shauna: And do you know that those two kids stayed asleep for that whole program so I could sit in the front and have Focus on the Family, minister to me.
Shauna: And truly, I truly did feel like that car just turned into God’s holy sanctuary, just speaking to my soul.
Jim: Yeah, that’s beautiful.
John: Wow. Well, what a privilege to be a part of your story and thousands and thousands of others. This is Focus on the Family. I’m John Fuller and we’ve got Shauna Amick with us today, and, uh, she has contributed to a book Real Families Real Needs: A Compassionate Guide for Families Living with Disability. Uh, we’ve got copies of that here at the ministry. Just call 800, the letter A, and the word FAMILY or stop by focusonthefamily.com/broadcast.
Jim: Shannon, you really identify with an Old Testament character. I think those that know the story of Hagar would put the pieces together, but explain Hagar, her travails and how you identify with it.
Shauna: Oh, sure, sure. All right. Well, um, people are going to want to read Genesis 16 to get the whole Hagar story, of course. But she’s the outcast who’s just feeling rejected and far from the Lord. And, um, I didn’t really identify with Hagar until the night before Sarah’s open-heart surgery, when um, for those first six weeks of Sarah’s life, she had been connected to all kinds of life support. And we knew that open heart surgery was waiting for her in the morning. And so I set myself up for this all-night prayer vigil in Sarah’s hospital room and right around midnight. Her nurse came in and started unplugging her from all of these life support machines. And of course, I was flabbergasted because I had been told for six weeks, she can’t survive without this.
Shauna: Before I could say anything, her nurse picked Sarah up out of her little hospital crib and put her in my arms and said, “I think you and your baby should go for a walk.” And I was about to ask, and she said, “Just don’t leave the hospital and be back in 20 minutes.” And it was all in her eyes. I had 20 minutes before, you know, it would affect Sarah’s health and not being connected to life support. So kind of like a zombie even I went on autopilot down the hall, and I got in the elevator and in a very childlike way, I wanted to get as close to God as I could. So I pushed the top button in the elevator, uh, not knowing where I was going to land. I really had not left Sarah’s room for those first six weeks. Well, the elevator door opened and what was waiting for me was floor to ceiling glass windows overlooking the Boston skyline at midnight. It’s quite a fascinating scene. And I ultimately felt very small, like here I am with millions of other souls, all of us needing the Lord. And who am I? Uh, and I’m holding this dying baby in my arms, right? The only prayer I could squeak out was the name of the Lord. And so I just said, “Jesus.” And I felt in that moment that God said to my heart, “I see you, I see you, and I see that dying baby in your arms.” And you know, Sarah still had Down Syndrome. She was still going to need open heart surgery in a matter of hours. We didn’t know if she’d survive it. That was the whole reason that that dear nurse let me go for a walk with my baby. It was the only time I ever held her without any tubes in between us. But what changed in that moment is I was no longer the outcast. I was no longer rejected, or I did not feel far from the Lord. He saw me, right? He saw what we were going through, and it completely changed my perspective and gave me the strength to go into surgery the next day.
Jim: Yeah. That’s a wonderful story of how the Lord will encourage us. Do you think in that circumstance, do you think the Lord would do that for everybody? And sometimes we just miss it?
Jim: I mean, I tend to lean that direction that he’s there, but sometimes we’re so um, lacking being in tune with him or even having our heart open to him that we’ll miss those moments where he’s expressing himself.
Shauna: Yeah, yeah. Well, you know what, I always I fully believe God speaks our love language.
Shauna: Right? So for some of us, it’s words, other times it’s maybe he shows us something in nature.
Jim: A hand on the shoulder.
Shauna: Exactly, right? And we do need those eyes to see. Um, so I mean, this is going to sound really very simple, but that’s why we’ve got to stay so close to him, right? In the word and in prayer. I would have missed it otherwise.
Jim: Tell us about your daughter today.
Shauna: Oh, my goodness, I’d love to. Yes.
Jim: Well, and what have you seen? All those fears you’ve alluded to this earlier that if, you know, now I don’t have those fears. I, you know, it’s not there, what you’ve learned. So that’s what I want to hear. What have you learned?
Shauna: Okay, what have I learned?
Jim: In seeing your daughter.
Shauna: I have learned the truth of the sanctity of life. And, uh, believe it or not, every night when I’m praying over Sarah as we go to bed, I am thanking God that she has Down Syndrome because she would not be Sarah. She wouldn’t be Sarah any other way. So the very thing that completely threw me into a panic is what I am able to thank God for now. Uh, you talked about princess dancers, right?
Shauna: Um, Sarah, of course, means princess. So she’s my princess, and I’ll tell you what, that kid can dance. (Laughter) Um, so she loves music. She loves dancing. Her favorite artist is Elvis, of course.
John: Oh my.
Shauna: And she does a fantastic Elvis impersonation.
Shauna: So any chance she’ll get, she’ll put on her Elvis outfit and grab a mic and and do a little dance for us. You know, she’s just everything wonderful. She’s got every emotion that everybody else does, which is actually something that maybe somebody listening doesn’t understand. Folks who don’t have friends or family members with Down Syndrome will sometimes say to me, “Oh, isn’t that great, you’re your daughter has Down Syndrome, that means she’s always happy, right?” Which personally, it’s a little insulting because it’s almost taking away her humanity. Like, well, no, she’s a person. She’s got all the same emotions you have. So. she’s happy and she’s sassy and,
Jim: And everything.
Shauna: … she’s fun and she gets angry just like me, um, and she loves Jesus.
Jim: In fact, you mentioned in the describing of Sarah her ability to pray,
Shauna: Oh, yeah.
Jim: that she’s a prayer warrior. Again, that would surprise some people because we assume that cognitively that connection may not be strong. But how does she pray?
Shauna: Oh, you know, Sarah is 16 years, 16 years old at this point. Her language is getting more and more understandable. I, of course, can understand her. But I’ll tell you what, if there’s ever a chance when the pastor or anybody asks for a volunteer to pray, she’s always going to be the first to volunteer.
Shauna: And there have been plenty of times where the rest of us, all we understand is Dear God. And then Sarah will just let loose, and she is, you know, calling down heaven. And at the end, you hear, “Amen.” Now, none of us might even know what she just prayed, but I promise you, Jesus knows what that little girl prayed, and I think it makes him smile.
Jim: Well, it’s so awesome. And even for some people to hear what you said a moment ago that, you know, your daughter with Down Syndrome that you sound comfortable with that, might even make them uncomfortable,
Jim: that you would be comfortable with that, right?
Jim: And I think the last question I wanted to ask you is just with that transformation that you’ve had moving from, what what has happened to me, Lord, to acceptance. And then, um, you know, today you wouldn’t want to do over.
Shauna: That’s right.
Jim: That’s powerful. Some people would be totally confused by that.
Shauna: Yeah, you know, I think that’s what I always want uh, moms to hear when they’ve been given a diagnosis, whether it’s Down Syndrome or any other kind of disability or adverse diagnosis, as I remember from my Focus on the Family broadcast there. Um, you can do this right. Don’t don’t let the world tell you that there’s something wrong with your baby. There’s nothing wrong with your baby. Uh, God’s hands knit that baby together in your womb exactly the way He designed, right? So, um, I guess if there was any do over, it would just be, I wish I was a little stronger,
Shauna: uh, when I went through it, um, but certainly wouldn’t change a thing about Sarah. And, and that’s what I want other parents to know, that if they go through that initial, of course, it’s a crisis. Of course there’s tragedy. Of course there’s trauma, right? We wouldn’t be human, otherwise, if we didn’t have any of these emotions. But once you get on the other side, you’re going to praise God that your baby is exactly the way God made that baby.
Jim: You know, Shauna, it strikes me that in this day and age, that mama’s heart for her child, it comes out so boldly in you. And even if in the beginning you didn’t feel it. You know you had to work through it, and I so appreciate that. But that mama’s heart, you think in our culture today with what I perceived to be just an all-out war against children,
Jim: … to be honest with you.
Jim: And so that, I’m pointing that out in that, you know, when you look at that, it’s just beautiful to see that you can embrace what is and that you can trust in God and and so many of us need to do that more so.
Shauna: Right. With, with regardless, right? As you said earlier, regardless of our our situation. I’m grateful the Lord trusted me with her, right?
Shauna: I I, I consider that an honor. Yeah. Um, you know, if I can speak to the mama’s heart, can I, for just a moment?
Shauna: Um, it’s, it looks different depending on who I’m talking to. So, um, and perhaps this will make sense, I hope it will. Sometimes I’ll have a little child, you know, a child come up and kind of be staring at Sarah. And, um, I I love this one scene where we were at a playground and a little boy not only was staring at her, but he finally came up to me and said, “What’s wrong with her?” And in that moment, my heart was just so tender because I saw this as a teachable opportunity.
Shauna: Um, well, you know what, there’s actually nothing wrong with her. You know, she thinks a little different than you, and maybe she talks a little different than you, but she loves the slide just like you do. She loves to swing. And you know this little guy, I don’t know, maybe he was five, he he kind of thought about that and he said, okay, and they played together for the next,
Jim: Oh, wow.
Shauna: … 20 or so minutes. Um, that was a wonderful gift. I kind of get the other extreme. (laughs) I can get a little mama bear when sometimes I might have an adult who thinks there’s something wrong with my child. And you know, shame on me, I should have the same attitude and see it also as a teachable moment, but I’m just gonna, I think this is the time for confession on this Focus on the Family. (laughs)
Jim: Some woman’s in a, in a minivan listening right now.
Shauna: Yeah. And there’s nothing wrong with her. You know, I mean, I’ve had moms, uh, kind of pull their children away from mine as though they think they’re going to catch Down Syndrome, and that just breaks my heart. So, I guess if there’s anyone in the minivan right now listening to this, um, think about that mom of a special needs child and give her a little grace and mercy and realize that her child is just as valuable as yours.
Jim: That’s, that’s a good word for all of us, actually. Shauna, this has been so good. Thank you for sharing your heart.
Shauna: Thank you for having.
Jim: And lessons learned and the good things. I hope, uh, you know the listeners and the viewers, I hope you’ve caught the heart of what we’re talking about today, that if you’ve received that adverse diagnosis or maybe something else is happening in your life, that is adverse, we have caring Christian counselors who can talk with you, and even refer you to a counselor in your area if you feel that is your next step. So call us. And this is humanity in all of its goodness and all of its darkness. And what you’re going through is certainly something we’d love to talk with you about. Plus, we have resources for you, including Joni Eareckson Tada’s great book that Shauna was a contributor of. John, what is that?
John: That is called, Real families, Real Needs: A Compassionate Guide for Families Living with Disability. And as you said, Jim, Joni is kind of the main author and editor for this great resource. And as always, um, we are a listener supported, viewer supported ministry here at Focus on the Family. If you’re able to, uh, make a contribution of any amount today, uh, we’d love to have you join the support team, help us make broadcasts and resources available to families in need. It’s very simple to donate on the phone, 800, the letter A, and the word FAMILY, or just click the link at our website. And when you make that gift, we’ll send the book to you as our thank you for being a part of the Focus on the Family ministry team. And on behalf of Jim Daly and the entire team, thanks for joining us today for Focus on the Family. I’m John Fuller inviting you back as we once again help you and your family thrive in Christ.