Life with a Baby with Special Needs

Michelle: Have you ever received a sweet Christian platitude when you faced a hard time? Did it help? Tracy Lane, a Christian and a mom of two special needs children, has had to deal with that.

Tracy: So God doesn’t hate me—and that’s not based on circumstantial evidence—because if that’s what we base it on, we could all come to that conclusion: our lives are hard; we live in a fallen world.

Okay; would I have wanted Him to rescue me from being a mom of two special needs kids?—I really would have. But more than that, He’s chosen to rescue me from eternity without Him; that’s much more important than the temporary time on this earth.

Michelle: Tracy Lane and her husband Matt have been on a difficult journey. She’s going to share that journey with us today on FamilyLife This Week.

Welcome to FamilyLife This Week. I’m Michelle Hill. “Every good and perfect gift”—you’ve heard of that verse; right? It’s found in James/James 1:17—“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

I just want you to ponder with me: “What if every good and perfect gift is seen by the human eye as imperfect?” It’s like that Christmas gift—you know, in 9^th grade—you remember you were hoping for the video game system or the motorcycle, and all you got was that scientific calculator. Your parents knew that that’s what you needed and now, 20 years later, you see it is what you needed.

Well, my friend, Tracy Lane, knows about those good and perfect gifts—gifts that she really didn’t want—but gifts that God knew that she needed to form her heart more like His. You may have heard some of her story on this program before. Tracy’s daughter, Annie, was born with half of a heart. Now, you would think that that’s a really hard thing to work through and that God would say, “Okay; with this next child, I’m going to give you an easy child.” But that’s not what has happened. Earlier this month, Davis was born to Tracy and Matt—their first son; their third child. He has Spina bifida and had to have surgery just three hours after he was born.

I sat down with Tracy two weeks before he was born; and I asked her how difficult that was to sit in the doctor’s office and receive, yet again, some hard news about the baby she was carrying. Here’s Tracy.

[Previous Interview]

Tracy: Since it was during the pandemic, Matt couldn’t go with me; so I was there by myself. We were looking at his heart; because that’s the whole reason we had a screening like that, out of precaution because of Annie’s history. I was able to FaceTime^® Matt in. I only FaceTimed him in during the heart part. [Laughter] When we saw that was healthy, then I’m like, “Okay; see you at home soon!”

I’ve been in those rooms enough to know like some other parts were taking too long: “I don’t understand what they mean,”—well, I didn’t then; I do now—then I had to talk to the doctor on the phone; because he was at home, protecting himself from the pandemic, or however you want to say it. He was like very sober, so his delivery of it was interesting for me; he said, “I don’t even know how to tell this to a mother like you,” which sets you up: “It’s going to be terrible.”

Michelle: Right!

Tracy: And you think of doctors as like having their bedside manner, but this was like a moment—again, told me how significant it is—because it was like he lost all of his professional demeanor/delivery; because he’s just a person too. To deliver this kind of news to a family like ours, and to receive this kind of news alone over the phone, in this really awkward time during a pandemic anyway, it was just like, “Wow!”—I mean, for him to say/he said, “I know you came looking for information about your son’s heart, but your son actually has Spina bifida.” Like how do you even respond to that?

Michelle: How did you respond?

Tracy: Well, I didn’t say much; I knew what that diagnosis was. It was just/I think for me—so like with Annie, when I got her diagnosis, I went pretty quickly into fighting mode—like advocating and strategy. With Davis, when I got his diagnosis, I went immediately into shut down. I kind of felt like, “There’s no way this could happen again.”

I think that was the hardest part. I’ve said multiple times: “It would have been easier if it was something with his heart, because maybe we would have anticipated that.” “This almost feels like—I said it that day; I was texting a few friends—“God must hate us. There’s no way, because He could have changed it; this happened before we even knew..”—when you look at how the body forms, before we even knew we were carrying him, this had already happened—and it’s just like, “There’s no way.”

Our choice to even have a third child was this enormous journey of surrender for me. God just really worked in my heart and my choice to say, “Let’s try again for a kid,” was like total obedience, not really desire. I told my friends: “This is such an act of surrender.” To surrender that—and then, that’s what God gives you—that was a very difficult process for me to walk through.

Michelle: Because when you told your daughters back in March that you were having a little boy, I’m sure that, in your mind, you’re thinking “Oh, this is going to be great! He’s going to grow up, and he’s going to play ball with my husband,”—

Tracy: Oh, yes.

Michelle: —and then, all of a sudden, you’re dealt with this hard news. You’re having to rethink everything.

Tracy: Yes; part of why I surrendered is because—yes, the conviction of the Holy Spirit; and I wanted to follow in obedience—then part of me, in the flesh, was like, “This would be so redemptive to end our childbearing with a healthy child, so let’s go for that. It’s going to be so redemptive when this is all done.”

It’s not been redemptive in that way—

Michelle: Right, right.

Tracy: —because that’s a lot to process.

Michelle: Not the feeling of: “Yes, God fixes the broken pieces.” It’s not feeling like that at all.

Tracy: No, no; He just has given us more broken pieces to redeem. He’s doing that, which—even with Matt’s response this time—that’s very redemptive in our marriage with Matt being the one to adamantly stand for choosing life for Davis and be the primary one researching this time.

I have felt—and we’ve talked a lot about this; we’ve done a lot of counseling about this—where I kind of carried the weight of Annie’s medical journey. That’s difficult to do alone when I felt that we both should. That’s something that we’ve had to really work to allocate the responsibilities so that it feels more of a shared burden. Then, this time, it was like Matt’s immediate response was: he’s going to be in this with me; we’re doing this together. That is redemptive in our marriage.

I know I can trust Matt’s leadership—he’s a great dad; he’s a loving husband—but to see him take that burden from me and be the one to proclaim it there, I mean, that changed even more my view of who I’d chosen as a life partner and what he was willing to do for us.

Michelle: What are the doctors saying about Davis right now? Where are you on this journey?

Tracy: In 13 days we have a C-section scheduled, which will be new for me; I have never had a C-section. That’s something we’re doing for him; that they think he needs to do.

In one way, it’s more of me surrendering and sacrificing for a situation I don’t really want and wouldn’t have asked for. I feel like that’s been this journey—like: “Hey, who wants to gain 20 pounds?”—like, “I don’t.” [Laughter] “Who wants to gain 20 pounds for a baby?”—like, “Okay!” “Who wants to gain 20 pounds for an unhealthy baby?”—“Ohhh,”—like, “Waa; waa.” I feel like that has been a lot of this.

It’s so interesting, too—because like I told you—how the girls responded and how they have just been like loving him and excited about him, they have really taken the lead. I’ve been doing counseling every week, just to process all of this with my counselor. There was a lot of guilt in the beginning; because I didn’t feel like I wanted Davis, even though I was committed to—I was making the choices that a mother would make to fight for him, and go to these long tests, and consider a fetal surgery for him—all of these things that would impact me, significantly, as the mom carrying him; but they were still choices. They weren’t/I wasn’t excited about it; I wasn’t feeling those things.

While my counselor gave me some good advice—because that’s/maybe we have too high of expectations of ourselves sometimes—in motherhood, I know I do. He said, “That’s not necessary; you’re making the choices. But you actually have two little girls, who are feeling very excited. You have a husband, who is very excited.” Matt’s desire for our son never wavered, based on this diagnosis/based on worries about the future—that never changed—and neither did Audrey and Annie’s.

I have three people in this house, who I can just follow their lead. I don’t have to be the one carrying all this, which has been a shift too. With Annie, it was me; and they were kind of following my lead. This time, I’ve been able to follow theirs, which has been very refreshing.

His diagnosis is the same: Spina Bifida. His prognosis is pretty promising, based on the location of his spinal defect and the surgery that they are going to do within the first

24 hours he’s born, and the place where he’s getting care. We already live in the place, where we would have needed to come, which is just another piece of God’s provision. The surgeon and the care team, every time we go to an appointment, they’re very encouraged by what they continue to find. I hope that that is the case once he’s born. They always remind us there are limitations of fetal screenings; still, they’re really encouraged.

The first day, when the doctor told us to consider terminating him; he told us that he probably would never walk. That’s not really what his doctors are saying now, based on all the information they have. They anticipate that he will walk, and that he’ll be able to live what they say is a pretty normal lifestyle; there will be limitations. But they’re just very encouraged about the conversations that we’re able to have and the plans for when he is born. We’re just prayerful that does actually all enfold the way that they anticipate. We’ll find out very soon.

[Studio]

Michelle: That’s Tracy Lane talking about baby Davis. Again, I spoke with Tracy just two weeks before Davis was born. I’m happy to report that Davis has been born; in fact, as I’m sitting here right now, I’m looking at a picture of Tracy and Davis. He is recovering nicely from his first surgery.

We need to take a break; but when we come back, we’re going to hear how Tracy is processing all of this, as a mom, and also as a child of God. We’ll be back in two minutes.

[Radio Station Spot Break]

Michelle: Welcome back to FamilyLife This Week. I'm Michelle Hill. Today, we are talking with Tracy Lane about her third pregnancy with her second special needs child. Here’s Part Two of my conversation with Tracy.

[Previous Interview]

Michelle: It sounds like this year—2019—as you and Matt are discussing having another child, you’re going, “I have to sacrifice. I have to give this over to God and let Him rule my life.” And then, 2020, you find out you’re having a little boy. Your girls aren’t happy at first, but then they come around. Then, all of a sudden, you find out that it’s not normal. You’re having to sacrifice; and once again, you’re having to hand over your newborn baby to a surgeon.

I’m sure you’re just sitting there, going, “God I have sacrificed; I have really sacrificed.” What are some of those feelings?—because earlier in our conversation, you asked the question, “Does God hate me?”—so where are you now?

Tracy: God doesn’t hate me—and that’s not based on circumstantial evidence—because if that’s what we base it on, we could all come to that conclusion: our lives are hard; we live in a fallen world. God doesn’t hate me, because of the gospel; He loved me enough to send His one and only Son to die for me. If I ever wonder if God does or doesn’t care for me, I have the historical evidence to prove.

Okay; would I have wanted Him to rescue me from being a mom of two special needs kids?—I really would have; I mean, “Yes.” But more than that, He’s chosen to rescue me from eternity without Him. That’s much more important than the temporary time on this earth. Still, practically speaking, I have to pretty much preach that to myself every day. If I get anywhere off of that focus, it can be a really dark hole really fast.

Michelle: Yes; I’m sure.

Tracy: Circumstances—they can lead our feelings. Feelings are good, and they also aren’t always to be trusted; just meditating on that truth has been really helpful for me.

But also giving myself permission—something I’ve learned from my counselor—giving myself permission to feel and admit the truth. Because he always says, “If I’m only admitting the truth—for example, ‘Well, God loves me; He sent His son to die,’—that’s absolutely true; but that does not negate the truth that this is a difficult situation/that our journey is harder than lots of other family’s journeys,”—so really being willing to say the truth on both sides.

Because if I could say both truths, I can use one truth to inform the other. If I’m always trying to push away: “Well, it can’t be that hard, because God’s still with me,”—well, no; then I actually can’t fully activate my faith. I can’t even lean into Christ mercies and His manna for that day the way that He would want me to. I’m trying to fix it myself and kind of muscle through it—that’s really not God’s provision in our relationship with Him.

I can trust Him to provide; it will glorify God more if I admit how difficult it would be, how impossible it feels, how scary and unwanted it is. Well, then, I can actually rely on God for real peace, real comfort; dive into what the Holy Spirit has to offer, and live in His strength instead of just trying to kind of like [care-free voice]: “Oh, it’s fine. We’ve done this before. At least, I know where to park,”—which all true. [Laughter] I’m glad I know where to park in the hospital now; but those things—that’s too trite. That’s not going to make the most use of the story and the children that God has given us. We want to steward well the story, even if I would have written differently. To do that, I have to admit the fullness of the whole story.

Michelle: Right; you mentioned that you have to preach to yourself every day the gospel that Christ died for you and forgave your sins. How do you—I mean, encourage us: “How are we to preach that every day?”—because that’s hard. Unless you have it tattooed on the back of your eyelids, that’s a hard thing to do. “How have you, practically, been doing that?”

Tracy: I think, for me, it’s daily time in the Word. Because I can wake up all hours of the night, or spend lots of screen time on my phone every day, researching Spina bifida diagnosis, and pictures of this, and scar repair and—“Why do I want to do that?”—it’s informative; it helps me prepare—but if I’m spending more time doing that than in prayer, if I’m spending more time doing that than reading the Word of God, if I’m spending more time doing that than listening to worship music—then that’s where my mind is going to be stuck.

For me, it’s just very practical—it’s very, very practical to really act on spiritual disciplines and make those such a normal part of my routine that that’s where my rhythms fall back into—instead of letting my fears and emotions drive me to kind of like to zone-out/the shutdown rhythms that are very easy to fall into. It’s the discipline of meditating in the ways that I can on Christ.

Michelle: As you have been developing those disciplines, have you had to set time during the day? Have you had to say: “Okay, 8:00 right now, the girls are at school; this is what I am doing”? Is it something you’ve had to schedule in your day to do that?

Tracy: Yes, for sure. It’s things I have to make tangible. For example, everyone knows that by the time you’re uncomfortable in pregnancy, you can’t sleep anymore at night, like you just cannot get comfortable.

For a while in the night, when I can’t get comfortable—my phone is on the nightstand, charging—so I just grab my phone, scroll through whatever. I realized that was affecting me a lot. Yes, I was tired; but it was where my mind was going in the middle of the night. It would be hard for me to fall back asleep, because then I would be anxious; then I was fearful. Then I read someone’s blog way too long about something I don’t need to read about, because that’s their story; that’s not our story.

I made—this is just one example of a conscious shift—one way that I spend time in the Word is through a Psalter, reading one Psalm a day. I actually put the Psalter—instead of downstairs on a coffee table, which is where I normally read it—I put it up on my nightstand. In the night, instead of reaching for my phone, I can reach for that. Being able to read that in the night—and still use my phone’s light; I try not to wake up Matt—but I’m spending time putting my mind on the truth of who God is and on the reality of another believer, David, wrestling with the goodness of God. I can wrestle right along with him and have that truth speak to me instead of grabbing my phone—mindless, anxiety, fearful—that’s not a road I want to go down.

Just making some practical shifts like that have really helped me. I just have to keep it right there, where that’s what I’m going to reach for instead of something else.

Michelle: Are you becoming excited for this new little guy/for Davis entering into the world?

Tracy: I am; I’m very excited. There was a shift for me at our 27-week appointment.

People like envision their ultrasounds—and you’re going to see your baby—and it’s so exciting. But when something is wrong with your baby, the only thing your ultrasound look at is everything that’s wrong. They’re not looking at faces, and profiles, and “Look at those little toes,”—no one’s saying that anymore—they’re measuring their brain ventricles and their kidney function. You don’t even know what you’re looking at while they’re looking at it with you, because it’s just so technical.

But on our 27-week ultrasound, it had been the whole technical everything. I had no clue what they were showing me on his body, but something about how long his femur was. I’m like, “Great! What does he look like?” [Laughter]  The doctor that came in at the end, she’s like, “I want to get one more view.” She flipped the view to the 3D view, and she looked at his face. It was like, “Oh, he’s still a baby! He’s not just Spina bifida; he’s not just this problem. He’s not just a new inconvenience; he’s a baby.”

That was the day I was like, “Okay; I think I can do this! Yes, there will be challenges; and there will also be so many beautiful moments that we get to just have with another baby in our life.” It changed for me, and I am excited. I think it will be even better once he’s actually here on the outside, meeting him for real.

Michelle: Well, can I pray for you?

Tracy: Yes!

Michelle: Let’s do that right now.

Oh Father, God, You are the Creator of all life; and we are fearfully and wonderfully made. We thank You for how You have created Davis. We thank You for how You have created Tracy.

Father, just even though this was devastating news to Tracy and Matt, Father, that You have used even that news to heal their relationship in new and interesting ways and how You have used the last few months to just work in Tracy’s life to see Your good and to see Your glory.

Father, we just pray for little Davis. We just pray for him; and that in those 24 hours after he is born, Father, just for that surgery and for the surgeon’s hands. Father, we just pray that this little boy—we know he’s going to be well loved—we just pray that he grows into a mighty man of You.

I just also pray for Tracy; I pray You continue to uphold her/continue to encourage her. Father, just as fears come and go, that You just continue to minister to her soul. It’s in Your name we pray. Amen.

[Studio]

Michelle: That was my conversation with Tracy Lane a couple of weeks before Davis was born. Again, I’m happy to say that Davis is here with us. He had his first surgery, and he is doing well. The Lane family is ecstatic to welcome this new little boy. Before Davis was born, Tracy wrote an article. We have that article on our website. We’ll also have an update on their daughter, Annie. Of course, Annie is a spunky little six-year-old, who is enjoying school this year. Go to our website for that information; that’s FamilyLifeThisWeek.com; FamilyLifeThisWeek.com.

Hey, next week, Barbara Rainey is going to join me in the studio. We’re going to talk about how to make home the safe place to be; because right now, it’s the place most of us are most of the time. I hope you can join us for that. I just love Barbara—I love her encouraging words and how she, in one way, is so practical—and yet, in another way, just keeps us pointing towards Christ. That’s next week on FamilyLife This Week.

Hey, thanks for listening! I want to thank the president of FamilyLife^®, David Robbins, along with our station partners around the country. A big “Thank you!” to our engineer today, Keith Lynch. Thanks to our producer, Marcus Holt. Justin Adams is our mastering engineer, and Megan Martin is our essential production coordinator.

Our program is a production of FamilyLife Today, and our mission is to effectively develop godly families who change the world one home at a time.

I'm Michelle Hill, inviting you to join us again next time for another edition of FamilyLife This Week.

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