FamilyLife Today®

Laura Wifler: When my daughter was diagnosed, I felt pity for her. I felt like all that stinks. I would confess that I have felt those things and I think it's a very 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.

Dave Wilson: Welcome to FamilyLife Today where we want to help you pursue the relationships that matter most. I'm Dave Wilson.

Ann Wilson: And I'm Ann Wilson, and you can find us at familylifetoday.com. This is FamilyLife Today.

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

Ann Wilson: What is it?

Dave Wilson: Weak. I don't want to talk about weak. I want to be strong. I want to go in the weight room and I want to throw up some pounds. I don't want to walk around like he's a weak man. I want to be a strong man.

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

Dave Wilson: Yeah, and actually, the emphasis is because when we're weak, He is strong.

Ann Wilson: Exactly, and it's a beautiful thing.

Dave Wilson: We've got Emily Jensen and Laura Wifler back at FamilyLife Today in Orlando with two of your eight kids between you.

Emily Jensen: That's right. Yeah, we each brought our oldest son to do a little Orlando adventure after we got done recording.

Ann Wilson: And we're going to talk about two of your books. You've each written a book. Emily, you've written *He is Strong*. I like the title.

Dave Wilson: Me too. *He is Strong: Devotions for When You Feel Weak*. I'm just 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*.

Well, here's the thing. If people know you, they know this, but it's very unique that you're related. You married her brother.

Emily Jensen: Emily married Laura's brother.

Dave Wilson: And you both have a child with disability. And you've even said doctors tell you that's very unique, right?

Laura Wifler: Yeah, 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. But I think Emily and I would both say that God has decided that and that there is some intention there. And so we trust him with that. But yeah, it's definitely kind of a wild story.

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

Emily Jensen: Sure. Our son with disabilities is the fourth in our lineup of five. And he had a really typical pregnancy with him, a typical birth. And so 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. And so we went to the doctor and just said, "What's going on here? This seems a little odd," but we weren't super concerned. She had a really hopeful prognosis. "It's your fourth child, he's probably really laid back, he'll catch up, we don't really notice anything." Eventually, when he was around a year old, after we'd done MRIs and all this testing, we found out through a genetic test that he has a very rare genetic syndrome.

He has one piece of a chromosome that's flipped upside down, and it has affected everything about him developmentally. His doctor at the time said, "He'll be walking into preschool. He might be a little bit behind, but get him in therapy, everything will probably be good." Well, 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. He does not talk at all. He uses a communication device occasionally. And he has just really significant delays in every area.

I would say our grieving process, my husband and I, has almost been a little bit abnormal because at the beginning we had such a good prognosis and such hope. And then every year that would go by, we would go, "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." Then *He is 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.

Adding these major medical things to something that was already extremely tough, it was just like I got the rug pulled out from under me and my life. It made me face my own weakness. So 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 Wifler: Sure. I was pregnant with my daughter. She is my youngest of my three children. There were a couple of things at the end of pregnancy that clued us in that perhaps she would have disability or perhaps she would have just had a failure to thrive in utero. At about two months old, we had thought we were in the clear, but I just noticed, since she was my third child, I felt like there are some things, I've had these other children, I know that she's not doing the same things.

Things like eye contact and smiling that she wasn't doing. Then we also, of course, had heard she might have disability, but it seemed like she didn't right away. At two months old though, I really lobbied pretty heavily for genetic testing because my mom gut just 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 that 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 inversion of 540 genes.

So very different than a single. It's again, unrelated. 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."

Ann Wilson: Only one in the world? Whoa.

Laura Wifler: 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." So we got about five pages of all the things that could potentially be complications for her and that set us down a very big high medical need situation. We were doing surgeries and scans and all the things. They also told us in 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 set." Time passes and years go by and eventually, I'm so thankful to be able to tell you for her, she is able to walk. She had a walker and she had leg braces.

Ann Wilson: She runs!

Laura Wifler: She runs, she does a somersault. She's still affected globally, so you can tell, but she really has great movement. Then also with talking, she has started to talk.

Ann Wilson: How old is she now?

Laura Wifler: 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 ever predicted, which we're so thankful for. So yeah, our stories are very different. Out of my daughter's story, I wrote the book *Like Me*. That's a kids' book that was just really designed to help educate children who perhaps don't have a lot of familiarity with other children with disabilities.

It's to just 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 also was 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 and so it seems like God's been writing that into our stories for a long time.

Ann Wilson: I'm thinking as I look at you two, isn't it sweet that you have each other? Have you needed one another in these days?

Emily Jensen: Absolutely. It's been a gift in the midst of a really hard situation, definitely a provision from God. 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 just night and day and you almost can't compare. I was telling Laura we were talking about coming to Florida and all these different things and I thought 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 we'll pick up and go somewhere as a family. We have emergency medication that needs to come and you've got to worry about sensory things and what are you going to do when there's a meltdown and is it worth it? There's just 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's not only my sister-in-law, 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 my challenges or 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 just make eye contact with each other and she's like, "I know, I got it, it's fine." Or we can kind of bond over, "I had to carry my kid screaming out of this place," and it's way different than carrying a two-year-old. You're carrying a seven-year-old.

Dave Wilson: And people are looking at you.

Ann Wilson: Yeah, and they're wondering what's going on.

Dave Wilson: They're telling you tips on how to raise your kid.

Emily Jensen: So it's been a gift.

Laura Wifler: It has been a gift. I think that I know what we have is rare. Obviously, very, very rare. But I think that 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. With disability often it's different than a different type of grief because let's say you go through a death in the family. Horrific, horrible. But there's also a finality to it and 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 what I was told. But for Emily, the news actually got harder for her. There's so much hope that you hold as a parent for your child with disabilities and you want to believe, "Well, 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. Still today Emily and I don't know what that is. We're waiting.

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. So that's where, going back to having a child in this day and age, there are a lot of resources for great community. I really think no mom or dad should be walking this path alone. Churches are doing more, I think. 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, "Oh well this is something medically that my child experienced. 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's out there and has a child with disabilities, I would just encourage them to seek out groups, seek out friendships and relationships and don't walk the path alone because you don't have to.

Ann Wilson: And I'm guessing as you think of your future with your husband, your future will be different as all of your kids get older and you may not be alone.

Emily Jensen: Absolutely. I think that's something that it's hard to wrestle with, but it's also something that you accept and plan for. It's really made a sweet dreaming and camaraderie even with my own husband that we'll talk about someday when we live in Florida and Jones is with us and he's in the back of the Jeep with the top down and we'll drive him around. You have to have some fun with it because it's hard. It is hard to imagine the caregiving. I think one thing that's helped me and us over the years is just staying in the grace that we need today.

Ann Wilson: The gospel. You always are talking about how does the gospel relate to my situation.

Emily Jensen: Because I'm not in that position yet. I'm not raising a 30-year-old at home yet and God will give me grace for that when that comes. I think if there's anything this journey's taught me is that I don't know what tomorrow looks like. I do not know what tomorrow will hold, but today's worries have enough for today. All I can lean on today is for the grace that I need to get through this challenge that's in front of me now. So yeah, be realistic, think about the future, imagine that, laugh together, cry together.

Figure out what are we going to need to be prepared for that to happen. There are a lot of practical things we've had to do, but ultimately I try not to live in that worry because I'm not there yet.

Laura Wifler: Well, on a related note, I think that is such good advice. I think too, recognizing that we are not to grieve the things we haven't been asked to grieve yet. So often when we get that diagnosis or any bad news, our minds go straight to the worst case scenario. I remember when my daughter really received worst case scenario diagnosis. I mean, that was what I was told from the best geneticist that that hospital had to offer and right away I'm like, "Oh my gosh, we're going to have to remodel our entire house and we're going to have to figure out an in-home care and I'm never going to be alone ever again."

We just spiral out of control. It's really easy to do that. I had to back up and say, "Okay, just like what Emily's saying, that's not my reality yet." So live in the present moment and trust that there's enough grace for today, there's grace awaiting you tomorrow. I think that it helped sometimes because I would look at a friend who was suffering something different, but just as hard. A friend who was going through a really horrific death in their family. Or maybe they lost a child or they had a stillbirth. Something that I personally have never experienced.

You know how you look at a friend and you're like, "How are you doing this?" You just can't imagine. You say, "I can't even imagine." That's actually because you're not supposed to be able to imagine because you haven't gotten the grace that that friend has. It is a special grace designed just for them. And God has that same thing for you as a parent to a child with disabilities. That helped me so much just what Emily's talking about of knowing that, man, I look ahead to the future and it can get bleak kind of fast or I can feel jealous of my peers and feel like that stinks, why don't I get that?

But then I remember that my life is pretty full now. My life is really beautiful now. My life has joy right now. So I can trust that God's going to have that stuff waiting for me someday.

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Ann Wilson: 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.

Dave Wilson: Oh you can spot them, can't you?

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

Laura Wifler: 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 so 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 fairly endless patience, of understanding, and even, and 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 just go up to a young girl in a wheelchair who is non-verbal and is at our school and just lay their hand on her shoulder.

Ann Wilson: That's so sweet.

Laura Wifler: I know. Me too, I'm tender with it too. It's because they understand in a very 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. Often, I think when it comes to seeing others with disabilities, we can often say we have pity.

Right when my daughter was diagnosed, I felt pity for her. I felt like all that stinks. I felt self-pity for me. I have felt pity for Emily, I'll confess that I have felt those things and I think that's a very 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, value, and dignity.

For my kids to grow up and spend time with another kid isn't based on whether they'll be more popular. It's not based on whether they're 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. 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 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, you learn real quick that I'm going to feel uncomfortable and awkward. They probably feel fine! Anyway, Emily what would you add? Anything?

Emily Jensen: 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 processing through all of that and 10 minutes later they're in the backyard playing football and they're laughing again. They can kind of 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 and I'm actually a sibling of someone with a disability and that's my youngest brother, my only sibling. It's deeply affected my life. It's deeply shaped me and it's hard for me to translate that to my own kids sometimes to know that's happening in their life too.

We've seen a lot of things like what Laura said. There's a kiddo in my twins' grade that their teacher was asking what in the world they were playing with a kiddo who doesn't talk the same way and is on the spectrum, some different things. They just went right over and played and they were taking turns every other day playing with him at recess. They had a teacher pull them aside and it wasn't until the teacher kind of pointed out, "That's really great that you're doing that," that they even really noticed. It was just instinctive for them to go to the kiddo who was different because they're comfortable with that.

That's like their brother. I just appreciate the comfort that there is with someone who looks different, sounds different. There's just not a big barrier in approaching them and talking with them. It's a gift. I don't think they have any idea, but—

Laura Wifler: But so much of that is, and not to toot our own horn, but is top down. It's taught. That I think is what's exciting for families who maybe don't have closeness with a child with disability. So many families here, I know a lot of my friends will say, "Well your daughter's the only one I know," or Eden and Jones, our kids. But then once their children go to school, there's actually quite a few kids typically in a public school these days because of integration that happened 20 some years ago.

Now children are being exposed a lot younger to other kids with disabilities and 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 and teaching them too to have comfort and familiarity with disability 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 maybe 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. Somebody should write a children's book about that.

Dave Wilson: Yeah they seriously should. I was going to say, Laura actually read it.

Ann Wilson: Did you? I did too.

Dave Wilson: Part of me was just going to skim it because we're interviewing and we read everything. I read the whole thing. It's really good. And it's really so helpful. I was thinking kids, nobody's telling them what you're telling them. And I'm even watching, looking at the pictures, thinking those are your siblings, doing some of that taking care of—

Laura Wifler: Yeah, actually it's very much written as an autobiography of our own lives for sure.

Dave Wilson: That's what I figured. And it's beautiful. I feel like every home should have that. And honestly Emily, this devotion, I mean I could go through and read— and it's not just about having a child with a disability.

Emily Jensen: No, it's not. 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. It's just a truth from scripture, relatable, easy to understand, applicable, and then questions that are ultimately turning you back to God. Because that's what the title is all about. They don't turn you inward.

Dave Wilson: No, it's about God. It's not that even we are strong, it's He is strong.

Ann Wilson: It's really good.

Dave Wilson: Another great day with Emily Jensen and Laura Wifler and man again their book is called *Risen Motherhood: Gospel Hope for Everyday Moments*.

Ann Wilson: And you can get your copy by clicking the link in the show notes at familylifetoday.com.

Dave Wilson: FamilyLife Today is a donor-supported production of FamilyLife, a Cru ministry, celebrating 50 years of God's faithfulness as marriages grow stronger and families flourish in Him.