Embracing the Unexpected
About the Guest
Life doesn’t always go as planned. Jennifer Shaw and Amy Julia Becker talk about the talk about the fear, despair and disorientation they sometimes felt as they sought to understand and fully embrace their child’s special needs.
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Jennifer Shaw and Amy Julia Becker talk about how they felt as they sought to understand their child’s special needs.
Bob: When Jennifer Shaw’s son was born with a severe sensory processing disorder, her whole world changed. Jennifer found herself wondering why God had turned her world upside down.
Jennifer: I do remember one day, right after his diagnosis, and really feeling like “I’m falling! I’m falling! I’m falling down this pit”—and I was actually lying on the floor, weeping, and opened my Bible. There was a verse there that was Psalm 42. It said: “Why are you downcast my soul? Why so discouraged within me? Put your hope in God for I will yet praise Him.”
Bob: This is FamilyLife Today for Thursday, April 25th. Our host is the President of FamilyLife®, Dennis Rainey, and I’m Bob Lepine. We’ll hear today about finding strength, grace, and peace, as the mother of a special-needs child. Stay with us.
And welcome to FamilyLife Today. Thanks for joining us. You know, when you think about parenting, the degree of difficulty in parenting is—there’s one notch for that. You throw in some special circumstances, and it just adds a degree of difficulty.
Dennis: I think parenting is one long process of learning fresh ways of trusting God. And we’re going to hear a couple of stories today that, I think, are going to encourage all of our listeners to follow Christ and to trust Him with what they are facing today; but it’s also going to minister to some parents who are facing some unique challenges in their family.
We have a couple of ladies: Jennifer Shaw—and I’m going to begin with your formal name—Amy Julia Becker. She likes to be called A.J. A.J. and Jennifer, welcome to the broadcast.
Jennifer: Thanks so much for having me.
A.J.: Glad to be here.
Dennis: A.J. is a graduate of Princeton Seminary. She is a writer for Christianity Today, and lives with her husband in west Connecticut, and a mom of three. Jennifer Shaw is also an author. She is a national recording artist, former opera. Are you still doing opera?
Jennifer: No, now, it’s Contemporary Christian.
Dennis: Contemporary Christian. She is a song writer, speaker, and also a writer. She is the mom of three and lives in central Ohio.
Both of them have written books. A.J.’s is called A Good and Perfect Gift; and Jennifer’s is called Life Not Typical. I think there is a lot of life that’s not typical; but as yours got started with your family—Jennifer, let’s begin with you and how God surprised you and how that was revealed in your family.
Jennifer: Well, my husband and I have three children. We have two girls and a boy, and we were having—I would have described my life, prior to the time you are referring to, as pretty perfect. You know, “I have a great husband, love my kids, and love my career.” Things were going really well.
Then, we went through a very difficult time that happened all at the same time—kind of like sweeping away the things that you stand on. My father, who I loved tremendously, got Lou Gehrig’s disease, which is always fatal. We were trying to have another child and weren’t succeeding in that. Then, finally, did get pregnant. Then, I miscarried. It was a life-threatening situation. So, all at once, I realized, “You know, we really don’t know if we have tomorrow.” You know, here, I’m going along; and you think everything is going to be fine. Then, you’re like: “Wait! Maybe I don’t have tomorrow.”
Then, our youngest child started—Toby—he started developing some really bizarre and extreme behavior. He was just a baby, but he never learned to talk the way baby’s do. They start to babble. Then, they start making words, and he never did that. He just cried all the time. And he couldn’t eat. He couldn’t be touched. It got to the point—by the time he was about two, that he—he would just sit in his red chair, and he didn’t move. He didn’t play. He didn’t talk. He didn’t eat.
We didn’t really know what was wrong with him. And that was right at the time when my dad was passing away. So, it was just, for me, a very dark and difficult time; but also, a time when I would say—I started to question things in my faith. “Is this faith true? Can you stand on it when things are really bad?” It was the time that the Lord showed Himself to be faithful in ways that I used to think were probably true but now I know they are. In every way, God was faithful. There was not one promise He made me that He did not keep in that time. So, it’s been transformative, in terms of my own faith.
Dennis: There are really two issues that you’re dealing with here. First of all is—not knowing what’s taking place—that’s one set of issues. And then, when you do find out what the diagnosis is—you then have another set of circumstances that you have, going forward.
Dennis: How long did you go before you got some kind of diagnosis?
Jennifer: Toby was diagnosed at 24 months—pretty much exactly on his second birthday. When we got the diagnosis, it was, as you said, it was such a relief. His diagnosis was sensory processing disorder, which is SPD. It’s related to autism in that, if you are autistic, you have it; but you can have it and not be autistic, which is the case with Toby. It’s a neurological disorder, where his brain wasn’t processing sensory input correctly. It looks really different in different children because it’s on a spectrum.
So, you can either over-respond or under-respond to sensory input. In his case, he was completely over-responsive to touch. What that means is—his brain was misinterpreting it. So, if he got water on him, he thought he was being burned. If he went outside and there was a breeze, his brain told him it was like electrical shocks going up his skin. Food felt like it was cutting his mouth, as it when down his throat. So, he couldn’t eat.
Bob: Tell us about the day you went to the beach—because this was right before the diagnosis; right?
Jennifer: Yes. This was when I was really in despair. We had—my dad had passed away, and we were very close. So, I was really depressed. And I had a number of shows in Florida. So, we had gone down anyway—in hindsight, I probably shouldn’t have gone, but I didn’t want to disappoint them. I didn’t want to cancel on a church.
So, someone had given us a beach house. Usually, they’ll cover our hotel; but they gave us this beach house. It was so kind. I couldn’t figure out how to turn it down, but I didn’t really want to go because I knew Toby wouldn’t deal well. But we got down on the beach, and he started to cry. I mean, the minute we parked the car. He saw the waves. He saw the sand. I still didn’t know what was wrong with him.
So, I’m talking to him. I’m saying, “You know, Buddy, it is okay. It’s alright.” I knew he wouldn’t want to touch it. I just didn’t know why. So, I—you know, “I’m not going to put you on the sand. We’re not going to touch the water. I’m just going to hold you, and we’re going to watch your sisters play. Your sisters like the beach. We’re going to go down.”
He was just screaming and panicking. I wrapped him up in a towel because I thought, “Well, that will help.” I knew he didn’t like wind. So, I said, “We’re just going to sit. We’re just going to sit here on the beach. You’ll be wrapped in the towel. You won’t touch sand and you won’t touch water.” He just couldn’t do it. He was sitting there, just screaming. And I just started weeping. You know?
I took him up to the car because I was so sad about my dad. It was really that moment—because everyone had said to us—said: “Oh, your son—he’s fine. He’s just probably a really picky kid,” or, “He’s—he’s fine. He’s unfriendly.” I’m walking up to the car going, “This isn’t normal. This is not that. There’s—we can’t explain this away. This is—something is really wrong.” We’d already talked to the pediatrician. We’d already talked to the people you think of talking to first. I thought, “Someone needs to help us because this isn’t okay.”
Bob: And when something like that is going on in a family, it changes the dynamic of everything about the family—about how you interact with your daughters, about yours and your husband’s relationship. It becomes the centerpiece; doesn’t it?
Jennifer: It does. And actually that—I mean, that’s such a common issue for special- needs families—but it was a big issue, in our family, with the girls, especially, that there were many times that they would feel resentful of the time necessary to be given to Toby.
Dennis: They were older?
Jennifer: Yes. So, he was already the baby. He’s already, in a way, to be spoiled because he’s the baby; but then, he ended up being such a high-needs person in our house that I think they felt pushed aside quite a bit. They were functional. They could go do their own thing, and everyone will pay attention to Toby. That was hard for them.
Dennis: I want to talk more about how a special-needs child impacts—not only the family—but also the marriage, too, because it can be devastating in a marriage relationship.
But I want to turn to you A.J. You had quite a different situation. Your time of not knowing only took two hours—
Dennis: —not two years.
Dennis: Share—share with our listeners that story.
A.J.: So, I was 28 years old, pregnant with my first child. My husband and I had been married for about six years, then, and had a pretty uneventful pregnancy—went into labor two and a half weeks early, which was somewhat unexpected—but it was actually a fairly easy labor and delivery—gave birth to a little girl. We named her after her grandmother, which we had already planned. So, we named her Penny.
At that point, she got an eight out of ten on her Apgar score. Then, about two hours after she was born, a nurse came in and asked my husband to leave the room. When he came back, his eyes were brimming with tears. He said, “The doctors think that Penny might have Down syndrome.” We knew—although it took two weeks to confirm that with a blood test—we knew that that was likely the case, just from some facial features and she had low muscle tone. Also, many people with Down syndrome, not all, but have what’s called a simian crease, which is a line that goes from one side of the palm to the other, and she had that. That, to me, actually, was almost a helpful touchstone to say, “No, this is real; and I need to start trying to adjust to this reality.”
There was the fear of not knowing much about Down syndrome. She was born on December 30th. So, it was a holiday weekend. Yet, they called a cardiologist to come in and do an echocardiogram of her heart that night because many babies with Down syndrome have significant heart defects. She did not, thankfully. But there was this medical-fear piece—but then, there was also just the fear of not knowing—having had, without even knowing it, a certain set of expectations—
Dennis: Oh, yes.
A.J.: —of who my daughter would be and feeling as though they had all been completely swept away. And there really was a huge adjustment—in my mind, in my heart, and in my faith—to understand who my daughter was and to really—instead of seeing her as a problem that needed to be solved or fixed—seeing her as a baby, who needed to be loved, and really beginning to receive her, as a gift.
Dennis: Let’s talk about the faith component of that, both of you. I really want to know how you processed that—were either one of you angry, at a point?
A.J.: At—yes—at a point, I was. It took a couple of months to feel anger. For me, I felt some degree of guilt, again, the fear and just the—I guess, the disorientation. I felt as though I had come—without knowing it—I was in seminary at the time. I’d come into the hospital with a theological grid. I had a child who didn’t fit in that grid because I thought that, “Okay, Down syndrome, at that point”—I thought: “Oh, this is something that’s wrong with the world. That means it’s an aspect of sin.” So, does that mean my daughter is wrong—an example of what’s wrong with the world? How do I love her? How does God love her? What does this mean?”
I had her in this different theological category—when what I needed was to understand the ways in which both of us had sin our lives—both of us had brokenness in our lives—and yet, both of us also were created in the image of God—that there was far more in common, theologically, than that was different. That took a long time for me to work out—not only in my brain, but also in my heart.
Bob: And it also left you—if we put it in human terms—your relationship with God was a little chilly for an extended period of time; right?
A.J.: Absolutely, I am—
Bob: As a seminary student?
A.J.: As a seminary student. I guess I was interning with our church, after Penny was born; but I wasn’t taking classes. I remember really feeling as though I had permission not to pray and that I was saying: “Okay, You call us to carry one another burdens. I need the body of Christ to carry my burdens right now because I can’t. It’s too raw. It’s too scary.” So, that was true for awhile. Then, there came a point where I felt as though God was saying, “Okay, it’s time for you to come back on your own and not just to ask the faith community to be the ones who are carrying you.” And there were—I mean, there was just this evidence of God’s care and sweetness, that didn’t penetrate, but I was aware of.
So, one thing that had happened before Penny was born, I was bemoaning the fact that I was pregnant and thinking: “I’m never going to finish seminary. My husband is a teacher. It’s a terrible time of year to have a baby. This is not going to work out for us,”—just kind of, in my head, thinking about why it was terrible that I was pregnant. And there was just that powerful sense of God, intervening in my head and saying, “But if you weren’t pregnant now, then, you never would have had this child.” That was such a powerful thought—that it stopped my own worry and fear. I told my husband about it. I told a friend about that moment of just thinking, “Yes, this child is exactly the one who we want.” Of course, at that time, I had no idea that this child would also be a child with Down syndrome.
Couple weeks after Penny was born, a friend of mine called me and said: “You know, I’ve been praying for you; and this passage has come to mind. I was a little hesitant to share it because you might be in a place where you don’t want to think that there’s a passage from Scripture that applies to your life, but I’m going to share it.” It was from Mark 9. It’s the passage when Jesus takes the little child and says, “Whoever welcomes this child in My name, welcomes Me”—
A.J.: —“and welcomes the One who sent Me.” And she said, “I really think that it is God’s word for you;” and it absolutely was. It reminded me—that sense of receiving this child, welcoming this child—that that would be some of God’s work in my life to receive Him and to receive a bigger understanding of who God is and who God is within the human race, as we are created in His image.
Dennis: Jennifer, what about you? Was there a moment when you were able to move from doubt, fear, anger, all the question marks, to a point of faith and trust in God, like A.J. just shared?
Jennifer: Well, what was interesting, for me, is that we had already been in crisis before we went through all this with Toby. So, I actually think I experienced that, pre-Toby, because, I know, when my dad was dying—when my dad passed away, when he was 58—and he was my hero-kind of a guy and lived right down the street. So, we saw him every day. I do remember getting up one day, right after his diagnosis, and really feeling—I mean, totally disoriented is the right word—like feeling like, “I’m falling! I’m falling! I’m falling down this pit, and I don’t know how deep it is. I don’t know—when I hit the bottom of it, will I be killed—will I be able to recover? How bad is this going to hurt?” You know, that wanting to protect yourself from pain and knowing, “Gosh! There’s no way to protect myself here.”
It was at that time that I remember feeling like God caught me—like God was the One who caught me. I was, actually, lying on the floor, weeping, and opened my Bible—totally, at random. There was a verse there that was—it looked like it was highlighted. It was there for me. It was Psalm 42. It said: “Why are you downcast my soul? Why so discouraged within me? Put your hope in God, for I will yet praise Him.” I said, “God, I have no hope. How am I supposed to put it in You?” And I turned the page. Psalm 46 said, “God is our refuge and strength, an ever-present help in trouble; therefore, we will not fear though the mountains shake and fall into the sea.” For me, that was such a pivotal moment in my life—and in my faith—like, “I am here in total despair, and You showed up”—
Jennifer: —“and You showed up so tangibly because I think You didn’t want me to miss it,”-kind of a thing. So, really, Toby’s diagnosis for us was more of a relief because we had two years to absolutely be head over heels in love with this kid and to watch him—I think that was my biggest fear was watching him slip away from me. And the fear that I was going to lose him—I’m going to make myself cry—but to have a diagnosis and say, “Oh, now, there’s something we can do!”
Dennis: Yes. You know, it’s interesting we typically think of seeing God from a mountaintop, where you can see all the beautiful peaks, and the sky, and the clouds, and the sun, and the creation—but as Barbara and I now have been married for more than four decades, and have raised our six kids, and have 19 grandkids—you all don’t know this—but one of our granddaughters only lived seven days. It was a valley, and it’s in the valley that you find God. He does show up there. He picks us up, and He is there.
I don’t know how anyone could receive a child like you two have done in your homes and families without believing that God is good. He really is good, and He loves us. And somehow, in a deep mystery that we’ll probably never fully understand on this side of heaven, that His image and purposes are being displayed through this child’s life and in your marriage and your family.
Bob: You know, I’m sitting here thinking about Job and the valley he found himself in. I’m thinking about the companions that came and, first, just sat around him. They just sat with him. In looking in both of these books, I think, really, these are books that just kind of come and sit with you, in the middle of what you’re going through, and don’t try to fix anything—just try to say, “God’s here. I’ve been here.”
Dennis: And I was thinking of Job, as well, Bob, and what Job said at the end of his life. He kind of—and I’m paraphrasing now—he said, “You know, I kind of spoke of You before and thought I knew You; but now, I’ve seen You. I’ve experienced You.” And a lot of life is made up of suffering. We don’t want to—we somehow—we don’t want to read the fine print of Scripture, but we will go through difficult days. It’s in those difficult days that God does show up, and He is real. He is very real!
Bob: Yes, and both of you have experienced that. I think you’ve captured that well in the books that you’ve written. Jennifer Shaw has written a book called Life Not Typical; and Amy Julia’s book is called A Good and Perfect Gift. We’ve got both books in our FamilyLife Today Resource Center. Go online at FamilyLifeToday.com to request a copy of the book.
If you know a parent who has a special-needs child, buy a copy of these books and give them to them as gifts—as a way to encourage them and to let them know you are praying for them. Again, go to FamilyLifeToday.com for more information about these books; or call us, toll-free, at 1-800-FL-TODAY—1-800-358-6329. That’s 1-800- “F” as in family, “L” as in life, and then, the word, “TODAY”.
Now, before we wrap things up here today,we want to say a special word of thanks to a special group of people, those of you who tune in to listen to FamilyLife Today, and who from time to time will get in touch with us and help support this ministry. We’re listener-supported. The cost of producing and syndicating this daily broadcast is covered by folks like you who will call in or go online and make a donation on occasion.
Today, if you’re able to do that, we’d like to send you a thank you gift. It’s a copy of a book by Tracey Eyster called Be the Mom. In the book Tracey offers help on how moms can avoid some of the traps that are easy for moms to fall into. The book would be a great gift for you to pass on to someone as a Mother’s Day gift. All you have to do is go to FamilyLifeToday.com, click the button that says “I CARE,” make an online donation, and we’ll send you a copy of Tracey’s book.
Or call 1-800-FLTODAY, make a donation over the phone, and ask for a copy of the book for moms by Tracey Eyster. Again it’s called Be the Mom. We’re happy to send it out to you, and we are grateful for your support of this ministry.
And we hope you’ll be back with us again tomorrow when we’ll talk more with Amy Julia Becker and Jennifer Shaw about the challenges of being a mom with a special-needs child. That comes up tomorrow. Hope you can be here.
I want to thank our engineer today, Keith Lynch, and our entire broadcast production team. On behalf of our host, Dennis Rainey, I'm Bob Lepine. We will see you next time for another edition of FamilyLife Today.
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