Risen Motherhood: Parenting Kids with Disabilities: Emily Jensen & Laura Wifler

Laura: When my daughter was diagnosed, I felt pity for her thinking, “Oh, that stinks.” I will confess I have felt those things. I think that’s a natural first response. But then I think when we back up and we think about it biblically and apply the gospel, we can remember that “No, every person on the planet is made in the image of God, and therefore they have inherent worth simply because they’re made in the image of God.”

Shelby: Welcome to FamilyLife Today, where we want to help you pursue the relationships that matter most. I’m Shelby Abbott, and your hosts are Dave and Ann Wilson. You can find us at FamilyLifeToday.com.

Dave: This is FamilyLife Today!

Dave: I thought the way to start today is a word I hate. This is a word I hate—

Ann: —what is it?

Dave: —Weak! I don’t want to talk about [weakness]. I want to be strong.

Laura: I feel you.

Dave: I want to go to the weight room, and I want to throw up some pounds. [Laughter] I don’t want to walk around [looking] like, “He’s a weak man.” I want to be a strong man.

Ann: That’s true for women, too. We don’t want to be weak; yet we’re going to talk about that.

Dave: Actually, I’m being facetious because when we’re weak, He is strong. [2 Corinthians 12:10, Paraphrased]

Ann: Exactly.

Dave: And it’s a beautiful thing. We’ve got the Risen Motherhood women. Is that what you’re called? The Risen Motherhood women.

Laura: We’ll take it.

Emily: We like it better than “girls.”

Dave: Yes, that’s better.

Emily: As long as you don’t call us “the Risen Motherhood girls.”

Dave: Emily Jensen and Laura Wifler are back at FamilyLife Today in Orlando, with two of your eight kids between you.

Emily: That’s right.

Laura: Yes, we each brought our oldest son to do a little Orlando adventure after we get done recording.

Ann: That’s really fun. And we’re going to talk about two of your books. You’ve each written a book.

Emily, you’ve written He is Strong: Devotions for When You Feel Weak. I’m going to tell you as a listener, if you’re a woman, you need to get both of these books. The other one is a children’s book called Like Me: A Story about Disability and Discovering God’s Image in Every Person.

We’re going to talk about both of those. You’re sisters-in-law. You do a lot of work together. You have a podcast together, so we’re going to talk about both of these books together.

Dave: Here’s the thing: if people know you, they know this, but [it is] very unique that you’re related as family. You married her brother.

Ann: Emily married Laura’s brother.

Dave: And you both have a child with disabilities. You’ve even said doctors tell you that’s very unique, right?

Laura: Yes, it’s incredibly unusual. We were told it’s like lightning striking twice, because we both have children with disabilities, and yet they’re unrelated as far as doctors can tell. I think Emily and I would both say that God has decided that, and that there is some intention there. So, we trust Him with that; but it’s definitely kind of a wild story.

Ann: Can you take us back to that? How many kids did you have? What went on in your life? What did you feel? Take us back.

Emily: Sure, so our son with disabilities is the fourth in our lineup of five. He had—I had a typical pregnancy with him, a typical birth. It wasn’t until he was about three- to six- months old that we noticed some things that were a little strange about him. He smiled and laughed, but he only rolled over once, and then he never really rolled over again. He would scoot to get around. He was not sitting up on his own. He had a hard time holding his head up.

We went to the doctor and said, “What’s going on here? This seems a little odd.” But we weren’t super concerned. She had a really hopeful prognosis: “Oh, it’s your fourth child. He’s probably laid back. He’ll catch up. We don’t really notice anything.” Months went by, and he just was not improving. He was not meeting his milestones at all.

Ann: Emily, what was going on in your heart and your mind as this was going on?

Emily: I had some fear. There was part of me that was thinking of the worst-case scenario, but no one had told us that yet. I was really busy with my hands full with other kids, so there was this low-level anxiety; but I had not gone to the worst of the worst in my mind yet, which we’ll get to because I think we have different stories here. But it started us down a path of understanding what was going on. Eventually, when he was around a year old, after we’d done MRIs and we’d done all this testing, we found out through a genetic test that he had a very rare genetic syndrome.

He has one piece of a chromosome that’s flipped upside down, and it’s affected everything about him developmentally. His doctor at the time said, “Oh, he’ll be walking into preschool. He might be a little bit behind but get him in therapy. Everything will probably be good.”

He was not walking into preschool. In fact, he did not walk until he was seven, so he’s only been walking for a year. He had a wheelchair. He’s still totally non-verbal, so he does not talk at all. He uses a communication device occasionally. He has significant delays in every area.

I would say our grieving process—[for] my husband and me, it’s almost been a little abnormal, because at the beginning we had such a good prognosis and such hope, and then every year that would go by we said, “Whoa, the gap is widening so much between him and his peers.” It’s a lot harder than we ever would have thought. His disabilities are a lot more serious than we ever would have thought. He’s strong.

This book was kind of after a cascade of events, but one of those for me was he had his first seizure, and he ended up being diagnosed with epilepsy. So, adding these major medical things to something that was already extremely tough, it was like I got the rug pulled out from under me and my life. It made me face my own weakness.

That’s a little bit of our story. But, Laura, you guys have a little bit of a different story, if you want to share.

Laura: Sure. I was pregnant with my daughter. She is the youngest of my three children. There were a couple of things at the end of my pregnancy that clued us in that perhaps she would have disabilities or perhaps she would just have a failure to thrive in utero.

At about two months old, we thought we were in the clear, but I noticed—since she was my third child, I felt like—there were some things. “I’ve had these other children; I know she’s not doing the same things.” Things like eye contact and smiling that she wasn’t doing. We also, of course, had heard, “She might have disabilities.” But it seemed like she didn’t right away.

At two months old, I really lobbied pretty heavily for genetic testing because my mom gut said, “Something is off.” We ended up being able to get that, and she was diagnosed. About three or four weeks later, we were told she has a genetic abnormality, which is similar to my nephew, Emily’s son, but actually wholly and completely different in the sense that, for her, she has a duplication and an inversion of five hundred and forty genes.

Very different than a single. It’s, again, unrelated things like that. Yet it affects her globally. But we knew that right from the outset. The doctor said, “She’s the only one in the world with what she has. We’ve never seen anything like this.”

Dave: “—in the world!”

Ann: Really?

Laura: Yes, the only one. [Laughter]

Ann: Whoa!

Laura: I know—pretty wild. They said, “But we can look at some children who are somewhat similar to her, and we can make some predictions.”

We got about five pages of all the things that could potentially be complications for her. That set us down a very big, high medical need situation. We were doing surgeries and doctors’ appointments and scans and all the things. They also told us at that time that she would likely never walk or never talk. They said, “We can be hopeful, but probably that’s where your expectations need to [be] set.”

Time passed and progressed, and years went by, and eventually, I’m so thankful to be able to tell you [that], for her, she is able to walk. She had a walker and she had leg braces.

Emily: She runs.

Laura: She runs, yes. [Laughter] She’ll do a summersault. She’s still affected globally, so you can tell, but she has great movement. Also, with talking, she has started to talk.

Ann: How old is she now?

Laura: She is in kindergarten; she’s six years old. She’s talking and definitely has intellectual disabilities and is delayed there, but overall, she’s doing much better than any doctor predicted, which we’re so thankful for.

Our stories are very different. Out of my daughter’s story, I wrote the book, Like Me. That’s a kid’s book that was designed to help educate children who perhaps don’t have a lot of familiarity with other children with disabilities, and to show them what it looks like to have a friend with disabilities, and to teach them what the “Imago Dei” is, which I know is a concept a lot of parents want to teach.

Of course, I was also thinking of my nephew, Jones, as I wrote that book, too. Both Emily and I have a lot of touch points with others with disabilities, so it seems God has been writing that into our stories for a long time.

Ann: I was with a group of 130 women the other night. I asked the women with children that have any sort of disability to stand. I was amazed at how many there were. Then we had all the women around them lay hands on them and pray for them. As they did that, these moms sobbed because they feel so alone, and they don’t have a lot of people to talk to or vent with or to complain or to cheer.

I’m thinking as I look at you two: isn’t it sweet that you have each other? What has that been like? Have you needed one another in these days?

Emily: Absolutely. It’s been a gift in the midst of a really hard situation; definitely a provision from God. I think one of the things that’s hard about being a parent to a child with a disability is that when you look at other families, it’s night and day. You almost can’t compare.

I was telling Laura—we were talking about coming to Florida and all these different things, and I said: “I just don’t think we could bring our son here and do some of these things.” That’s a real limitation for our family. It’s not as easy as just saying, “We’ll pick up and go somewhere.”

Ann: —as a family.

Emily: —as a family. We have emergency medication that needs to come, and you have to worry about sensory things and what you are going to do when there is a meltdown. Is it worth it? There are so, so many challenges. You look around at other families and can get really discouraged by some of the limitations and challenges that are there and how “easy” it feels like other families have it, and they don’t even understand how easy they have it.

What’s been nice is Laura is not only my sister-in-law and my ministry partner, but she’s also my best friend. I think it would be so hard if I felt like, “She’s doing these things as a mom, and she doesn’t understand these challenges. When my son has a meltdown, or he pulls my hair, or he does whatever, she’s not going to get it.”

But she does get it. It’s such a gift that we can make eye contact with each other and she’s saying, “I know. I got it. It’s fine.” [Laughter] Or we can bond over “I had to carry my kid screaming out of this place,” and it’s way different than you taking your two-year-old screaming—

Laura: —carrying a seven-year-old.

Emily: Yes, that’s very different than a two-year-old.

Dave: And people are looking at you—

Laura: —yes.

Dave: — [and thinking], “You’re a bad mom.”

Emily: Yes, they’re telling you tips on how to raise your kid. So, it’s been a gift.

Laura: It has been a gift, and I know what we have is rare; obviously, very rare. But I think it’s been incredible to me to see what it’s like to have a child with disabilities in the day and age that we live in and how different it is than it used to be. I think there’s a lot of hope.

Ann: Me, too.

Laura: Just like you were talking about of people being aware and saying, “Okay, we want to pray for these moms who are facing a very unique trial in their life.” It’s something that I think, with disabilities, often it’s a different type of grief. Let’s say you go through a death in the family. [That’s] horrific, horrible. But you also—there’s a finality to it. You say, “Okay, how are we going to move on? How do we learn to live within this knowledge?”

But with disabilities, it’s very much an unfolding, day by day. For me, the news was maybe a little better than I was told; but for Emily, the news was actually harder for her. There is so much hope that you hold, as a parent, for your child with disabilities, and you want to believe, “They’re going to be basically just like normal or close to normal.” That’s what you tell yourself. But then there’s this slow waking up to the reality that, “No, this is how far off they are.”

You don’t know what—still today, Emily and I don’t know what—that is. We’re waiting, and every day we’re walking forward, we’re discovering new challenges, new painful moments, new milestones that just rip your heart out because your child didn’t get them. You need community.

That’s where, going back to having a child in this day and age, there are a lot of resources for great community. I think no mom should be walking this—or dad should be walking this—path alone. Churches are doing more. I’ve seen more of them connecting families. There are online organizations.

Something incredible is, on Facebook, there’s a group of parents that have children that are somewhat similar to my daughter. They’re not the same, but there’s this group where we can share maybe not Christian faith, but we can share: “This is something medically that my child experienced,” or “Oh, my child’s 14. Here’s what it looks like for us.” So, there’s been some camaraderie that can even be developed.

For any parent who is out there and has a child with disabilities, I would encourage them to seek out groups, to seek out friendships and relationships. Don’t walk the path alone, because you don’t have to.

Ann: I talk often with parents who have kids with special needs or some sort of disability, and the other siblings are kind of remarkable as a result.

Laura: You can spot them, can’t you? [Laughter]

Ann: Exactly.

Laura: Yes.

Ann: What does that look like for your families? Is that true?

Laura: Absolutely. I think that it has really shaped our family culture. I don’t want to toot my own horn, and we are not at the end yet. I don’t have proof in the pudding, so I need all of that to be out there. But I do consistently feel like I see in my children a compassionate heart being developed; one of endless patience, of understanding, and even—I see this in Emily’s children, as well, and even some other cousins that we have in our family that are close with us—just a heart for those that are overlooked.

I have seen my kids go up to a young girl in a wheelchair who is nonverbal and is at our school and just lay their hand on her shoulder. [Laughter]

Ann: That’s so sweet! It makes me cry.

Laura: Yes, I know. Me, too. I’m tender with it, too. Just because they understand in a unique way that that other person is the Imago Dei and they deserve—what we say in our home is they deserve dignity paired with compassion. Oftentimes, when it comes to seeing others with disabilities, we can often say we have pity. 

When my daughter was diagnosed, I felt pity for her, thinking—I thought, “Oh, that stinks.” I felt self-pity for me. I have felt pity for Emily. I will confess that I have felt those things. I think that’s a natural first response. But then I think when we back up and we think about it biblically and apply the gospel, we can remember: “No, every person on the planet is made in the image of God, and therefore, they have inherent worth, value, and dignity.”

For my kids to go up and spend time with another kid isn’t based on whether they’ll be more popular. It’s not based on whether going to have more friendships or more success or be better at sports or whatever it is. Instead, they know, or I’m hoping that they continue to learn to know that that person deserves their presence simply because they’re made in the image of God, and that we can feel for someone. We can say, “I’m sorry this happened.”

We can still recognize the effects of the fall. We don’t ignore those, but we can still give them that worth and value through spending time with them, through speaking to them, through smiling, even when, maybe, we don’t get a response back that we feel like is appropriate socially, or even if we feel uncomfortable or awkward.

That’s something I talk to my kids about all the time: “This life isn’t about you.” We say in our home, “My life for yours.” What that means is that Christ gave His life for us and, therefore, now we can give our life to others. That’s not in some self-sacrificial martyr way, but in a way that says, “This life isn’t about me feeling comfortable.”

I think when we get around people with disabilities, we learn really quickly that “I’m going to feel uncomfortable and awkward.” They probably feel fine. [Laughter]

Anyway, Emily, what would you add?

Emily: It’s interesting watching it through a child’s eyes, because they can hold sorrow and joy together a lot better than an adult can sometimes. It’s even been interesting watching our kids see our son have a seizure, and they have that fear and [are] processing through all of that. Ten minutes later, they’re in the backyard playing football and they’re laughing again. They can transition in and out of that.

They feel the weight of it but they don’t carry it in the same way that we do as an adult. Sometimes, I think about childlike faith, and what it looks like to accept what God has given and have sorrow for the sad things and have joy in the good things and be able to have both and to still laugh. I learn that from my kids a lot.

I’m actually a sibling of someone with a disability. That’s my youngest brother, my only sibling, so it’s deeply affected my life. It’s deeply shaped me. It’s hard for me to translate that to my own kids sometimes to know that’s happening in their life, too; but we’ve seen a lot of things, like what Laura said.

There’s a kid in my twins’ grade that their teacher was asking, “What in the world?” They were playing with a kid who doesn’t talk the same way and is on the spectrum and some different things. They just went right over and played. They were taking turns every other day playing with him at recess.

The teacher pulled them aside, and it wasn’t until the teacher pointed out, “That’s great that you’re doing that,” that they even noticed. It was like an instinctive [thing] for them to go to the kid who was different, because they’re comfortable with that. That’s like their brother.

Now children are being exposed a lot younger to other kids with disabilities, so it’s so important that we do have a lot of conversations around this topic and that parents are teaching that Imago Dei, and where children find their identity and worth, and how they can value other people; teaching them, too, to have comfort and familiarity with disabilities and adaptive equipment and knowing what to say when they see something that maybe feels foreign to them or different and knowing what to say when a child acts out in anger in a way that they don’t understand.

Those conversations are really important for families to start having at a pretty young age to start building some of those little blocks. It doesn’t have to be this big, “Let’s sit down!” but over time.

Ann: Somebody should write a children’s book about this. [Laughter]

Emily: Yes, they seriously should.

Dave: I was going to say, I read the whole thing.

Ann: It’s really cool.

Dave: It’s so helpful. I was thinking [for] kids, “Nobody’s telling them what you’re telling them.” I’m even watching the pictures, thinking those are your siblings, right? Some of that taking care of— [Laughter]

Laura: Yes, it’s very much written as an autobiography of our own life, for sure.

Dave: That’s what I figured.

Ann: And it’s beautiful. I feel like every home should have that. Honestly, Emily, this devotional [book], I could go through and read—it’s not just about having a child with a disability—

Emily: No, it’s not.

Dave: No, no, no.

Emily: That was more just the inspiration behind it. I thought to myself: “What would someone who’s feeling weak need?” which is really what I need. [Laughter] It’s just truth from Scripture—relatable, easy to understand, applicable—and then questions that are ultimately turning you back to God.

Ann: Yes.

Emily: Because that’s what the title is all about.

Ann: They don’t turn you inward.

Emily: No, it’s about God. He is strong.

Ann: Yes, He turns you—

Dave: —it’s not even, “We are strong.” It’s “He is strong.”

Emily: “He is strong,” that’s good.

Laura: As somebody who identifies more on the strong side and doesn’t like to think about weakness or talk about weakness, I highly endorse this book. I read every chapter; they were dripped to me in a Word document. It was so fun, because I found myself tearing up over my laptop as I read this on a Word document. I thought, “This is not my thing.”

I just encourage you, no matter how you feel about weakness or strength, this is an incredible book that just points you to Jesus over and over.

Ann: This would be a really good gift to give to a girlfriend. It’s really good.

Dave: I would end this way: by saying thank you. I didn’t have a brother or sister who had disabilities, but my mom [and I], after the divorce and the death of my little brother, moved to Ohio from a mansion in New Jersey. My dad was an airline pilot. We moved to this little house, and she became a schoolteacher of physically challenged little kids across the street with disabilities.

I was around these little boys, and it changed how I viewed everything. I saw my mom as this strong woman who had compassion. You guys are—that’s you! It’s been a blessing to have you here. You’ve walked that; you’re going to walk it your whole life.

Ann: Yes.

Dave: You’re now imparting it to a legacy of your children. I can’t wait to see what these little guys that are tearing apart our building right now—[Laughter]—are going to be as men someday.

Emily: Oh, boy! Respect for people, but not for things all the time. [Laughter] No, we’re working on it.

Ann: Thanks for always pointing us back to Jesus.

Laura: You bet! Of course.

Shelby: I’m Shelby Abbott, and you’ve been listening to Dave and Ann Wilson with Emily Jensen and Laura Wifler on FamilyLife Today.

I loved how real it has been with Emily and Laura today and the last few days that we’ve had them here with us at FamilyLife Today. I hope that it has been a life-giving time for you, as well.

If you want to hear more from Emily and Laura, they’ve written a book called Risen Motherhood. This book really gives you guidance and encouragement for navigating the complexities of motherhood in a world that’s kind of confusing and has conflicting advice. [It] really gives you the opportunity of how to connect your faith with your everyday challenges of being a mom.

You can get your copy of Risen Motherhood by going online to FamilyLifeToday.com, or you can give us a call at 800-“F” as in family, “L” as in life, and then the word, “TODAY.”

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Again, that’s only happening this month, in the month of May. In addition to partnering with us, you get a lot of benefits when you do. We’re going to send you a copy of Chris and Elizabeth McKinney’s book called Neighborhoods Reimagined. They were with us earlier this week.

You’ll also get to become part of our new online community and be a part of the conversation here at FamilyLife, including the opportunity to join us on a Facebook Live event with me and the Wilsons on June 5^th at 7 pm. Again, that’s only for monthly partners. So, if you want to learn a little bit more about how to give, head over to FamilyLifeToday.com and click on the “Donate Now” button at the top of the page. Or you can give us a call with your donation at 800-358-6329; again, that number is 800- “F” as in family, “L” as in life, and then the word, “TODAY.”

Join us next week as Alistair Begg is with Dave and Ann Wilson. He’ll be discussing marriage, ministry, and the profound insights that we can get from the sermon on the plane. That’s next week.

On behalf of Dave and Ann Wilson, I’m Shelby Abbott. We will see you back next time for another edition of FamilyLife Today.

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