Trusting God in the Valley
About the Guest
What do you do in life’s valleys? Amy Julia Becker and Jennifer Shaw talk about the unique challenges of raising a child with special needs. Amy Julia is mother to Penny, who has Down syndrome. Jennifer's son Toby, has Sensory processing disorder. Both women commend their husbands for stepping up and serving them sacrificially when times were especially hard, making their marriage bonds even stronger. Amy Julia and Jennifer also share how they’ve seen God at work in the midst of their child’s difficulties.
Amy Julia BeckerA graduate of Princeton University and Princeton Theological Seminary, Amy Julia Becker’s essays about faith, family, disability, Down syndrome, privilege and culture have appeared in the Washington Post, USA Today, ...more
Jennifer ShawJennifer Shaw is a national recording artist, songwriter, speaker, and contemporary worship leader. With degrees in both piano performance and vocal performance, Jennifer completed her graduate work in opera performance at the prestigious Manhattan School of Music. A former professor of voice at Cedarville University, Jennifer has been the music director and worship leader at her church for over ten years. Jennifer is a Top 40 Billboard artist and has garnered a #3 worship song on the national r...more
Amy Julia Becker and Jennifer Shaw talk about the unique challenges of raising a child with special needs.
Trusting God in the Valley
Bob: When Jennifer Shaw’s son, Toby, was diagnosed with a severe sensory processing disorder, Jennifer found herself wondering, “Why is God doing this to me?” or even more, “Is God really there, and does He care?”
Jennifer: You have that little doubt, in the back of your mind; and yet, He’s shown up for me in ways that I cannot deny! So it has forced me to live my life in a whole new reality. I say I have a whole new perspective on what life is about. For me, what became paramount is to know Christ and to make Him known; and that is what the Lord taught me in that valley.
Bob: This is FamilyLife Today for Friday, April 26th. Our host is the President of FamilyLife®, Dennis Rainey, and I’m Bob Lepine. We’ll hear today from two moms who have learned a number of lessons, as mothers of special-needs children. Stay with us.
And welcome to FamilyLife Today. Thanks for joining us. You know that I tend to be, just by temperament, by personality, an optimist. I see the bright side of things; right?
Dennis: I have—
Bob: You’d affirm that about me; wouldn’t you?
Dennis: I would affirm that about you.
Bob: I remember I could take you to the place where I remember being—was a beautiful spring evening. Mary Ann, my wife, and I were out walking around the neighborhood, with our daughter, Amy, in the stroller. It was warm, and the sun was going down. It was just—we’d just moved into a new house that we’d had kind of built the way we wanted it built. I remember having the thought, “Life is pretty perfect.” And then, this thought hit me, “And that doesn’t go on forever.”
It was like, “Where did that come from?” And I wanted to rebuke that spirit—you know, that evil spirit—from putting that thought in my head; but I stopped, and I thought, “Nobody gets from birth to death with sunsets and warm breezes and without a bump in the road.” It was interesting because God was preparing us, at that point, for bumps that were just ahead, that I couldn’t see. But up until that point, life had been fairly ideal.
It’s helpful to know, ahead of time, that some of this is coming. You may not know what the circumstances are going to be—but to anticipate: “We will experience bumps in life, in our marriage, in our relationships, as we raise our kids.” If you know that, going-in, then, when the bumps come, they maybe take you a little less by surprise.
Dennis: That’s right. I think the issue with marriage, and family, and the bumps or storms, or however you may describe them—you’ve got to have a builder of your life, your marriage, and your family. And frankly, I don’t know of one that can compete with Almighty God—
Dennis: —and with Jesus Christ. Now, that may sound a little absurd to state it that way; but people build their houses on the sand. That’s what Jesus said a lot of folks do. They refuse to do what God says to do and acknowledge Him as the builder of their homes.
And we have a couple of moms with us in the studio who both have experienced—I’d have to say more than a bump—some major challenges in their families. Jennifer Shaw and A.J. Becker join us on FamilyLife Today. A.J., Jennifer, welcome back.
Jennifer: Thanks so much for having me.
A.J.: Thanks for having me, too.
Dennis: And both have written books. Jennifer’s written a book called Life Not Typical, and A.J. has written one called A Good and Perfect Gift. They both are moms of three children, and both are moms of a special-needs child.
Bob: Yes, Jennifer, it was your third pregnancy. Your son, Toby, was born. And six months in, you realized, “Something is not right here;” but it wasn’t until he was two that you got a diagnosis. The diagnosis was SPD. What’s SPD stand for again?
Jennifer: Sensory Processing Disorder.
Bob: So, anything he touched or felt kind of was—he was feeling it wrong and processing it wrong. He was—life was hard for him, and it was hard for you. You weren’t sure what to do with that.
And Amy Julia, you shared with us that your daughter, your first-born, Penny, was born with Down syndrome. The first time you were aware of that was two hours after she was born, when the doctors came in and said, “We see some characteristics here that indicate maybe Down syndrome.” But in both cases, these special needs that these children had—all of a sudden—caused you to recalibrate everything about life.
Dennis: It does, Bob. And A.J., I wanted to ask you a question. You know, I mentioned earlier that you’re a graduate of Princeton Seminary. You had studied the Scriptures. You’d actually had a test, during your pregnancy, to determine whether your baby was perhaps a Downs baby; and the result of the tests came back?
A.J.: Yes. So, I, in retrospect, did not think very much about sticking out my arm to get some blood drawn for a prenatal test and thought: “Information is always helpful. So, why not have this information?” It was a test, at that point, called a quad screen—looking at four different hormone levels, in a mother’s blood, to try and identify potential conditions in the child.
Mine came back as a 28-year-old woman—I should have had a 1 in 1,000 chance of having a child with Down syndrome. The test came back. It said, “You have a 1 in 316 chance of having a child with Down syndrome,” which is still a very low chance; and yet, three times higher than it should be for someone your age. So, we were offered an amniocentesis. We declined, mostly, because it’s an invasive procedure; and we knew that abortion was not something that we would have wanted to discuss.
Bob: So, you and Peter never played the “Well, what would we do if….” I mean, here they tell you—you don’t have a child with Down syndrome. You didn’t have a conversation saying, “Have you ever thought what we would do if we had a Down syndrome baby?”
A.J.: You know, we didn’t go very far down that road. I think, for both of us, there was not a question about terminating the pregnancy. So, it didn’t seem like a conversation we needed to have until we had more information. Then, once the ultrasound seemed so definitively to say, “No,” we didn’t really think about it again.
It was more, in my subsequent pregnancies, that we had to ask those questions because having a baby with Down syndrome puts you in a category of women who are considered high-risk for pregnancies. So, they had a 1 in 100 chance of having a baby with Down syndrome again. That was when we had to ask a lot of those questions: “Well, what if we have another child with Down syndrome. Is that fair for our family? Is that right—can we handle that?” That was when all those questions came up; and then, again, in my third pregnancy, as well.
Dennis: I have—well, Bob and I both have a couple of friends who started a ministry called Tangled House. It’s a ministry to marriages and families that have special-needs children. I was with one of my friends the other day. He told me that 1 in 10 children, being born today in our country, are special-needs children. He said: “The needs of these marriages and families today, across the country, are urgent. They need instruction about how to make their marriage and family go the distance.”
I want to ask both of you—and I want to begin with you, Jennifer—what was the impact of this on your marriage? I mean, it had to be dramatic.
Jennifer: Well, statistically, many marriages for special-needs families fail. I have had that question a lot, “Did you have a lot of difficulties in your marriage?” You know, for me, all I can say to people is: “It can’t have no effect. It’s going to have an effect one way or another.” In our marriage, it actually strengthened our marriage; and I don’t give any credit to myself in that. To be real honest, my husband stepped up in a way that was truly sacrificial—and was the hands and feet of Christ to me.
I think, personally, because I was already in such grief from my dad—and I really didn’t have a lot of capacity left—but I was never in any doubt that we were in this together—kind of thing. I knew how much Nathan loved Toby and that he loved Toby every bit as much as I did. He took that opportunity, I suppose, to step up and be the dad and the husband that he knew God had called him to be. He really served our family.
So, it just—our marriage is much stronger than it was before this happened with Toby. I would have said we had a very happy marriage before we went through all this with Toby; but now, we have a very solid marriage. I know the character of my husband, and I respect it very much. That has been a tremendous blessing that God brought out of pain.
Dennis: A.J., what about you and your husband?
A.J.: Yes, I can echo a lot of what Jennifer had to say. We also had a grief experience together, before Penny was born. She is named for her grandmother, who died of liver cancer, two years before. I think having gone through that together and seeing that we responded very differently—and quite frankly, judging each other for our different responses with his mom—actually, having worked through that enabled us, when Penny was born, to trust each other to respond differently.
He went through a severe grief for about 24 hours in the hospital, and he emerged and was really fine. That’s been the case for the seven years that she’s been with us. It took me about a year. That’s a long time to be in different places; but because there was no judgment from him toward me in that year, he actually gave me a great deal of hope that I would one day be able to see her as the person that she was first. Over time, that did happen, but it took a lot longer for me.
Dennis: I want to go back and just underscore a statement you made because I think—and I’m not saying Jennifer and her husband are atypical—but I don’t find that most couples do what you guys did, Jennifer—where you go into it together, you shoulder it together, you come out together—
Jennifer: I would agree with that—
Jennifer: —because I talk to a lot of people, and I don’t think that is quite the norm.
Dennis: Right. More are like A.J. and her husband, who process grief differently—in different ways, in different paces, and as male and female, as mom and dad. I mean, Barbara and I have never faced anything, with any of our children, of this magnitude. We faced some tough stuff, and I’ll tell you—it’s really easy for a husband and wife to miss each other in the valley. I mean, it’s like you can be in the valley; but you can be going in two different directions. Have you experienced that?
A.J.: I—again, we experienced that more, I would say, with Peter’s mom. We knew she would die. So, as we were anticipating her death, that’s where we experienced that: “I don’t understand who you are. I don’t understand how you are processing this.” He saw me as someone who was not trusting in Jesus because I was so sad that she was dying—and, “Shouldn’t I trust that she would be with the Lord?”—and, “There is so much that’s good about that, even though we’ll be sad she’ll be gone.”
I saw him as denying his emotions and not being willing to enter into the real pain and brokenness of this world. We could have done that same thing when our Penny was born and when she got her diagnosis because it was a similar pattern—where I got somewhat mired in grief—I spent a year, trying to figure all this out—and he, I could have said, was just being in denial about the feelings he had for our daughter. Yet, our experience with his mom had enabled, I think, again, just to trust each other in that. So, we were very different.
Bob: And I have to ask you—
Bob: —“Who was right in how you processed it?”
A.J.: Both of us. [Laughter]
Dennis: That’s a great answer!
A.J.: One of the things that Peter—one of the things that Peter says, which I think picks up on something you were saying, Jennifer, is just—that if there are cracks in the sidewalk, it is severe weather that will expose those cracks. So, there are cracks in all of us. I often say that disability is God’s magnifying glass that shows all of us our humanity. What it does is it magnifies the brokenness that is within us; but it also magnifies, I think, the gifts that we all are or can be. One of the things I have thought a lot about is how to hold intention—being created in the image of God and the glorious possibilities that come with that—but then, also, being these fallen, broken creatures who are desperately in need of help. I think he and I err on one side rather than the other; but if we are able to bring them both together, then, we have a deeper understanding of what it means to be human, in God’s sight.
Bob: That’s where two are better than one.
Dennis: You know, I so appreciate what you both have shared here today. I’m going to ask you what would be an impossible question to truly answer—but you both have been taken places that—well, it’s a deep valley, around a child. You can’t fix it, you can’t make everything perfect, your expectations have to be adjusted, family has to be adjusted, marriage has to be adjusted—but in the midst of that, you both have seen God. Now, I want to know how have you seen Him, in a Down syndrome little girl. How have you seen God, in a little boy who has difficultly with sensory input, with processing that?
Jennifer: Well, I have seen God in so many places. The main place I’ve seen Him show up is in my own faith—that He has, as I said, transformed some of the things I thought were true about Him, I now know are true about Him. And that is a rock that I stand on because I don’t have that—you know, you have that little doubt, in the back of your mind; and yet, He has shown up for me in ways that I cannot deny! So, it has forced me to live my life in a whole new reality. For me, what became paramount is, “Why are we here?”—“...is to know Christ and to make him known.” And that is what the Lord taught me in that valley.
The other way that I have seen the Lord daily is in Toby because He has done a remarkable thing in my son’s life, through therapy and through God’s intervention, where we have seen such healing in Toby’s life. Toby—himself—has such joy. As he walks around my house—and he’s now completely functional—I mean, he’s now pretty much a typical kid—I see what the Lord has done for him, and he is my daily reminder of God.
Dennis: I want you to share the story of Toby who had not said virtually anything; right?—hadn’t said anything to you?
Jennifer: Yes. Oh, he didn’t have sounds. I mean, you know, babies go, “Ba-ba, Goo-goo,” and they get their sounds.
Jennifer: He didn’t even have sounds.
Jennifer: Yes, he was 24 months. He had no sounds, and we started in therapy. Six weeks later, I was reading him his bedtime story. Every night, I would read him a story, and I would sing to him, and I would pray with him, and I would put him in bed.
Dennis: This was after he had some—
Jennifer: Six weeks—
Jennifer: —six weeks of therapy. And he had no sounds. That night, I prayed with him. I said, “I love you, buddy. Good night.” He, out of the blue—he turned around in my lap and patted me on the cheek and just, out of nowhere, he said, “I love you, Mom”—just the whole sentence, all at once!
Bob: First sound he’d made?
Jennifer: Well, I mean he’d cried. [Laughter] He cried, but yes—and it was very slurred. I mean, he didn’t have any ability to articulate well, but I—
Dennis: But you heard it?
Jennifer: —I knew what he was saying. Of course, I started sobbing, which scared him to death. I thought, “Great! Now, he’ll never say it again.” But I mean, from that point on, he just—by Christmas, he was speaking in full sentences, all the time. By that spring, if you didn’t live with him, you wouldn’t have known he really had any issues. He was in therapy for years; but he’s been discharged from all of his therapy now for two and a half years.
He’s in second grade. He plays soccer! You know, my son who was terrified of grass—that we might make him touch grass—that he would panic and cry—now, he plays soccer. You know, it’s a miracle, and I see God in him every day.
A.J.: Yes, it’s hard to know where to start. I certainly—Penny has a spirit to her that helps me to see God—I think similar to what you are saying. I remember when she was very little—she was—even at age two—very enamored with Jesus. I remember we had this book. It was a wonderful book that Moody Publishers puts out. It’s all about these Jesus stories, but they never show Jesus’ face. You always see Him from the back. She just said over, and over, and over again, “See Jesus!”
Similarly, in that same book, there was the story of the Good Samaritan. She was appalled, as a two-year-old, that there was no one who would stop and help the man. She kept saying: “Me help! Me help! Momma, help! Momma, help!” It was just—even to this day, if she sees an ambulance, she will say, “Mom, we need to pray.” There’s just this attentiveness to the needs of others and faith that God will respond to those needs.
So, there’s some sort of spiritual acuity that I think she has that allows me to see the personal nature of our God. As someone who is pretty cerebral, and went to seminary, and so knows all of these abstract ideas about God—it can be easy for me to forget that God cares about us, in a personal way, and that God actually, in His being, is able to attend to the very mundane details of our lives. Penny reminds me of that day-in and day-out. And she has really thrived. We’ve thrived as a family because of her presence in it—not for that reason alone—but certainly in part because of that.
Bob: Do you think Penny knows and trusts God better than you do?
A.J.: Oh, that’s a great question. Certainly, trusts—I think I do know more about God.
Bob: Right; right.
A.J.: In terms of an actual, personal relationship with God, probably—that is probably true.
Dennis: I want to thank both of you for sharing your stories. We were commenting earlier, before we came in here, “I can’t believe I get paid to do this—to come into the studio.” I really do feel like we’ve had the opportunity to be able to hear a couple of stories where it feels like the Holy of Holies. It feels like God is here. You ladies are a couple of heroes—and your husbands and your families. Thank you for displaying the glory of God—the image of God—what He’s really like to our listeners because I know there are listeners facing issues, right now—
Dennis: —that they’re going to look at differently because they’ve heard your hearts and what God has done in you. Thanks for being on FamilyLife Today.
A.J.: Thanks for having us.
Jennifer: Thank you.
Bob: I’ve been sitting here, thinking about moms I know, who are mothers of special- needs children. I’ve been thinking, “I want to get copies of your books so that Mary Ann and I can pass those on to those moms and let them know we’re praying for them”—just as a way to encourage them and to let them know that we understand the challenges that they are going through.
Jennifer’s book is called Life Not Typical. Amy Julia Becker’s book is called A Good and Perfect Gift. And we’ve got copies of both books in our FamilyLife Today Resource Center. Go to FamilyLifeToday.com. You can order copies from us, online. Again, the website is FamilyLifeToday.com; or call, toll-free, 1-800-358-6329. That’s 1-800- “F” as in family, “L” as in life, and then, the word, “TODAY”. Ask about the book, Life Not Typical, and the book, A Good and Perfect Gift, when you get in touch with us. We’ll get those resources out to you.
You know, one of the great privileges that we have here at FamilyLife Today, is to hear stories like we’ve heard from Jennifer and from Amy Julia today. We hear some remarkable stories of God’s work in people’s lives. And we know that goes on throughout the country, each day as this program is heard in more than a thousand cities all across America.
And we have a favor we’d like to ask you. If you’ve been listening to FamilyLife Today for any length of time—if God’s used this ministry in some way in your marriage, in your family—we’d love to hear your story. So, what we’ve done is we’ve set up a voice mailbox where you can call 1-800-FL-TODAY.
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So, let me ask you to consider making a phone call—1-800-FL-TODAY. Press “8” and leave us a voicemail message, telling us about how God has used this ministry in your life.
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And with that we have to wrap things up for today. Thanks for being with us. Hope you and your family are able to worship together this weekend, and I hope you can join us back on Monday when we’re going to talk about what the book of Nehemiah has to say to moms. Susan Merrill joins us to talk about what she learned as a mom as she read through the book of Nehemiah. Hope you can be here for that.
I want to thank our engineer today; his name is Keith Lynch, along with our entire broadcast production team. On behalf of our host, Dennis Rainey, I'm Bob Lepine. We will see you back on Monday for another edition of FamilyLife Today.
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