Episode 58 || Having A Child with Special Need: An Interview with Abigail Dodds Transcript

This transcript has been edited for clarity.

Emily: Hey guys, this is Emily Jensen here. Today we have a really special episode for you. We’re talking to Abigail Dodds about her journey with her son, Titus, who has special needs. She is a wife, and a mom to five kiddos, and she’s also a Bible study teacher and she does a lot of writing online. We will link this to our show notes, but you can actually find a lot of her stuff on being a mom to a child with special needs on her blog, hopeandstay.com. But we know no matter where you’re at in the journey, or even if you don’t have a kiddo directly with special needs, you are going to be encouraged by this show. She has so much wisdom to share; everything for how to deal with practical self-care, how to trust God’s goodness in the midst of hard things; how do we face fear with truth? So the list goes on, I’ll just really encourage you guys to stay tuned and I know that you’ll be blessed. So, let’s listen in.

Laura: Hey Abigail, thank you so much for joining us today on Risen Motherhood. We’re so happy to have you here. Can you take just a second to tell us a little bit about yourself? We know you’re a wife, a mama, a writer. Please share a little bit with our listeners, about your child with special needs.

Abigail: I am married to Tom. He’s a great man and I got a really great deal when I married him. He is an elder at our church, here in the Twin Cities, and we’ve been married 15 years this June. We’ve got five kiddos; our oldest daughter is Eliza, she’s 13, and then we’ve got Seth who’s 11, Aliana who’s nine, Evangeline is six, and then our youngest, Titus, who’s three. He’s our little guy with special needs. We part-time home school, so that keeps me busy. That means that our older four kids are in school for three days a week, and then home two days a week. I also write and teach Bible studies at our church, and I spend time in therapy appointments and doctor appointments. I love baking and gardening, and I am an “okay” knitter, [laughter] but I like it. Those types of things take up all my free time, and then, just like the rest of you, I am just trying each day to stay awake [laughter] to be kind to my kids, and to keep everybody in our house alive [laughs].

Emily: I love that, “being kind”. That’s an important detail that I always have to work on. [laughs]

Abigail: Isn’t it? It so easily slips away. That’s right [laughter]. For Titus’s story, before he was born, at his 20-week ultrasound, he was flagged with a small cerebellum. We had lots of check-ups and appointments just to check on his brain growth. But then when he was born, they thought everything was fine. He was born full-term; he was little, so 4 pounds, 15 ounces, but they sent us home just like normal, and said, “We think things look fine.” But I knew pretty quickly that things probably weren’t fine. So at two months, I finally took him to a pediatrician and said, “I am seeing things that don’t look good”. His eyes were very, very crossed and he had very low muscle tone, which in a newborn is so hard to tell. But he had no muscle tone. So those types of things tipped me off. We went to see lots of doctors after that, and we were sent on a whirlwind of appointments. He ended up having eye surgery early on, and he had an MRI which showed all the different things that were going on in his brain, which basically just amounts to the fact that there were some places that weren’t fully developed. He’s got a hypoplastic pons—which is a fancy way of saying that part of his brainstem is small—and that’s the part that regulates breathing and swallowing and sleep. That area between the two hemispheres of your brain is thin, and so that can affect a lot of development. And then, just delay overall; he’s just not getting the connections made as much as he should by that point in time. So basically what we were told, at that point, was that it looked like what he had was genetic, and that there was only one real condition that lined up with some of the things that were happening with him. It was a fatal condition, and that usually those kids die around one or two years old. It was pretty devastating at that point because they had nothing else really to tell us except, “Just keep working with him”, and, “We don’t know for sure”, which was really wonderful when they said that. But it was really hard to be in that limbo mode for so long; that waiting and just watching to see whether he declines, or whether he progresses. So we started lots of therapies, lots of testing. And then at fourteen-months-old, he had a massive seizure at our home, and so we went by ambulance to a children’s hospital, and I stayed in this room—it felt like one of those horrible TV shows—while over a dozen people worked on him and he was unresponsive. He was intubated and at that point, he had another MRI and while we were still in the hospital, they gave us the results of it. And it looked just horribly bleak; it was like they were saying there were all these new things wrong. I was pretty thrown back because it looked like he had been progressing in some ways. I was surprised. But then our neurologist just looked at the MRI and said, “Why, actually I think it’s good news. Things aren’t really getting worse; they’re holding steady, that’s what we want to see”. So it’s good to get a second opinion. Not that that opinion would have changed anything, but it sure can mess with your emotions. After the seizure, which seemed like the worst thing that had ever happened to us, it really set us on a positive course for his life and development, because he got on anti-seizure meds after that, he got a feeding tube placed because swallow studies showed that he was aspirating everything. And also he had not gained weight well and so he needed one anyway. And they had been debating with this, and this sort of pushed them over the edge. Those two steps were just so positive for him; his development after that point just took off in a lot of ways. It was very counter-intuitive, but we were very, very thankful. And now that we’re past that point of worrying like, “Oh, is he going to make it or not”, they are saying he’s looking great, his brain is holding steady, he’s developing; now we’re just spending a lot of time being thankful, seeing what new things he’s doing. He runs around like a crazy man and makes his opinions known. He’s got quite a personality. It’s also very funny because he’s the tallest and biggest of our kids at three-years-old; [laughter] for a three-year-old, which is hilarious because he’s totally tube-fed [laughter]. And it’s like, “Oh Lord, you’re giving us a very healthy, growing child now”. He’s a big boy which is funny because he was so little for so long. But we’re just spending a lot of time being thankful now.

Emily: Thank you so much for sharing your story. I know that there are probably moms listening, who are just all over the spectrum with different things that they’re dealing with, with their kiddos, who are maybe just starting evaluations for a couple of therapy appointments, or they’re seeing neurologists, or they’re talking through different medications with their doctors. No matter where people are at on their journey, it feels exactly like what you described; it can be a rollercoaster and it can be scary, and it can be one day you’re encouraged and the next day you’re just devastated. I know so many moms probably identified with you, and I am so glad to hear that, like you said, that the thing that felt like everything is going wrong with this thing really helped him grow and develop.

Laura: As Emily said, and you shared a little bit, I know that especially at the beginning of the journey, there is a lot that plays in—a lot of emotions that play in. A lot of times you’re doing some research which brings in fear; you have the unknown ahead. A lot of times no matter where you are, with special needs, there’s a lot of unknown guilt; maybe feeling like it’s your fault, or just feeling very, very alone in your journey. What are some of the first thoughts that you had when this journey was just beginning, and how did the gospel really shape your thoughts? Or, how did God comfort you with his truth?

Abigail: You know, one of my very first thoughts—it probably sounds silly—was, “Does having a child with a disability or with special needs mean that I have to get all new friends”? [laughter] That really was something that hit me hard and I don’t know why. And thankfully, I discovered that the answer is of course, “No, we don’t”. But it was a strange discovery process of figuring out how our friendships, with folks who have no commonality in the special needs world, how they could enter into our life, to what degree they wanted to, and also making new friends within the special needs community. For a long time, it felt like we had nothing to give in the friendship department. We were just receiving, receiving, receiving and all we had was needs. That to me felt really terrible, it was hard. But God really used it in profound ways to humble me, and to grow us, and others, in meeting our needs. So it really deepened our friendships and did really wonderful things in many ways.I also had lots of thoughts that started with “I can’t.” Lots of “I cant’s” flooded my head; like, “I can’t do all these appointments. I’ve got kids I am homeschooling, I can’t do this.” I thought, “I can’t survive with this kind of sleep depravation, I just can’t.” I thought things like, “I can’t watch my child decline,” and thankfully, I haven’t really had to watch that. But those kinds of “I cant’s” led me into self-pity; a kind of a self-pity mind-set that the Lord, thankfully, convicted me of pretty quickly. But that conviction didn’t keep me from sometimes having the “I can’t” thoughts. But what the conviction did was it helped me know what to do with those thoughts when they started firing at me. I remembered that I am united to Christ, and I didn’t think of it like that. But basically that was the gist of it; remembering that he had already walked the path of obedience for me when he went to the cross. And that all those “I cant’s” that kept flooding into my head, those were acknowledged there, and those were dealt with there. Because it’s true; it wasn’t a total lie, it was true. I can’t do everything. I can’t do anything apart from God. But because of Jesus, I can walk this road that he’s given me. I can follow in his footsteps. Those are the ways that I had to combat those thoughts, and just realizing that I can die everyday, and I have to, to my sin and to live in him. Then the other thing was just recognizing that he is sovereign, and that none of what was happening was an accident. That he planned for Titus to be our son before the foundation of the world, and that that was a good plan that he had for us. It wasn’t just a good plan for me, it was a good plan for my husband, and it was a good plan for each of our older kids. That was one I had to wrestle through. But the goodness of the plan doesn’t take away the pain of what’s happening. I would love to just make sure that the people listening hear this. Disability is a sign that something has really gone desperately wrong, and that is that sin has entered into our world, and we need to grieve over it. It is worth grieving over. It’s really sad that sin has entered into our world and caused disability. Not because of a particular sin that we committed or our family committed, but just sin in general. It’s come into this world and it gets into things like babies’ brains. And so on any given day, the parent of a child with special needs is somewhere on that spectrum of being really, really happy that God tailor-made this plan and gave you the special child, and then feeling very grief-stricken over the loss and the pain of it. That’s something that special needs parents have to live in. That’s the kind of group that we have to be—a sorrowful,  always-rejoicing kind of people.

Emily: I am already a mess Laura [laughs]. I’m just sitting in the listener position being ministered to.

Laura: I know, and I can totally tell. Abigail you make such a good point about what we talk about here on Risen Motherhood all the time, about how the fall affects all of us. That none of us are immune, and that it should grieve us, and it make things really difficult and we have to confront that. How would you say the gospel, and your understanding of creation and redemption, give worth and value to your child’s life and to your role as a mom? In what ways does this show God’s good design, because we know that his plan is good, even if we can’t see it in the moment, or we’re not able to tell because of life circumstances around us? It’s not as obvious. What would you say are ways that point you to seeing God’s goodness?

Abigail:  Well, for able people, for those of us who aren’t struggling with a disability, it’s really easy to think that our worth comes from our ability to reason, to think properly, or to perform. But it isn’t, and disability helps us to learn that. Our worth is derivative; it comes from God. It’s because we were made by him and according to his image. Then our worth is also underscored by God’s love for us. God loves us, and he proved that at the cross, and that gives us immeasurable value. His love actually transforms what is otherwise unlovely and unlovable into something lovely and lovable. That whole truth helps me to see the grace of God everywhere, and it really puts thankfulness into my heart. One of the things that came to the forefront really early on in my thinking, in this process, was the reality of the resurrection. This was something that I absolutely had to get settled, and it is so simple [laughs]. It is just so simple, but I had to do business with this. Did I really believe that a man, who was God, died and that his actual body, like, his physical body was resurrected and that he’s alive even now? I really believe that. I really believe that a real man, who was God, died and that his physical body was made alive again. I believe that it’s going to happen to me and to all of God’s children. And that hope, that resurrection hope is so powerful. It’s powerful because it’s true, and it has kept me from wilting during some of the really hard times. Thinking on the possible death of our children can be absolutely terrifying, and I spent the better part of a year kind of with that possibility staring right in my face. And I was told by really wise Christians, good advice. The advice was, “Do not borrow that kind of trouble,” like, “Don’t think on that possibility.” It’s good advice and there’s wisdom there, but on the other hand, fears don’t abate. They don’t go away simply by ignoring them. I needed to look my fear right in the face and take out its fangs. The only way I could do that was by really doing business and thinking on the resurrection, and remembering the hope that dead bodies are brought to life and restored. Even now, dealing daily with disability, and things being, for us, fairly stable and good, resurrection hope is still the solid ground that I stand on in this special needs world.

Emily: I love how you brought that to the forefront. My younger brother has special needs, and many years ago, when I was scrupling through this issue, as a young adult, one of the things that finally brought me tremendous joy and comfort was the realisation that because he places his faith in Christ, some day he will experience the same resurrection that I will. And he will not have the limitations that he has now, and I’ll have a relationship with him, as God created him, without any of the intellectual delays, with the speech delays, and the physical things. It was like once that clicked to me, I was just like, “Okay." And it’s not that there isn’t still grief, but, just that...

Abigail: Oh, but there is freedom , isn’t there?

Emily: And it’s for all of us, and all of our sin in every relationship. I think that was particularly comforting to know this is not forever for him.

Laura: I just love what you talked about of taking the fangs out of fear. No matter what we’re facing as moms, we all have different areas of fear that we face. And that is such a good truth of just staring that down, because when we do that and we apply the gospel to that, and we put the cross in front of it, it holds no fear for us because we know, that no matter what happens here on this earth, that eternity is waiting for us. That no matter how much our present changes, it doesn’t change our future at all—our standing with the Lord. One thing I know that can get really lost when you have a child with special needs, or just even any time in the little motherhood years, specific to a situation where you do have a child that is demanding more of your time, what practices have helped you to hold fast to your relationship with God, and just remember these promises, especially these ones that we’re talking about right now?

Abigail: Self-care is a hard topic for special needs parents, because the nature of the special needs often means that it’s hard to find other people to care for your child. I am really thankful I’ve got close family. So family live nearby, and they know how to care for Titus. My mom watches him once a week on a Wednesday morning so I can do Bible study. I have a couple friends who are really eager and said, “We want to learn to take care of Titus. Please teach us, put us on the list.” And they had to keep nagging me, and I was like, “Oh, no.” So I am just very thankful. But I would just say, it is worth the time to find a couple people and help, if it’s possible. Sometimes it just isn’t possible, but if it’s possible, to train them and get your child comfortable with them, spend whatever time you need to with them so that it can happen. If it can’t, just to know that God will sustain you and come up with other ways that you can have some time or some space. One of the things that my husband and I do is that we let each other sleep. One of Titus’s hardest things is sleep. He just doesn’t sleep well, and he never has. He sleeps in our room, in a bed next to our bed because he’s on a tube feeding overnight, and the sleep depravation is real and it is horrible. So letting each other sleep is just a practical way that we can keep each other sane and feel cared for. He lets me sleep in on certain mornings of the week and sleeps in on certain mornings of the week. But I would just say that the main way to care for yourself is to feed yourself God’s word, and keep going to church to hear the word and be with God’s people. I was so tired and stressed out during Titus’s first year; I could not concentrate on my Bible reading plan. It’s hard to explain, but it just felt like driving down a highway and the cars are just going past you, and it was like the words were just going past me and I was having a hard time taking things in. I eventually chucked it, and I started studying a very short book, in-depth. I can’t handle anything longer than five short chapters or something because I can’t think longer than one sentence. My brain was just very compromised, I guess [laughs]. My encouragement would be to special needs moms, don’t require more of yourself than is realistic. God doesn’t require you to do a certain kind of Bible reading plan, or a certain checklist. You might not be able to feed yourself a gourmet meal of God’s word, but you just need to eat the meal that you can digest. That might be the little memory verse that your child gets from Sunday school. Eat it up, savor it, and ask God to make that little verse abound in your life. You will be so shocked and surprised at how God uses something little like that, when you shut down all the voices of guilt, and just allow His word to nourish you. Don’t stress about what form it comes; just allow it to nourish you. That’s probably the most important self-care practice. I would say the other practices that would be important to apply are things like, you just need to pray. When everything has gone wrong in your special needs child, everything is going the wrong direction and it just feels very out of control; like for us that might be maybe Titus has only slept a few hours and maybe he’s throwing up first thing in the morning or in the car, or we can’t go to church again, or whatever it is, that’s when we find out if we really trust God and His plan. When we’ve tried to put all the good stuff in place and things are just still not working, that’s when we don’t have time to strategize. There’s no moment then, to say, “Okay” [laughs]. You might have a very brief moment, but it’s not going to be much of a strategizing moment. But it is a moment to pray. It is a moment to say, “I need help right now because there’s throw up everywhere, and I’ve got these other kids coming apart, and things are wild; they’re just spinning.” So cry out to God in your weakness, and God will come and help. He does enable us to clean up the throw up again, cheerfully. He does enable us to do whatever that thing is that makes us obedient that next moment, that seems so impossible. But we need to ask him for help, and he’s really willing to give it. So those are the strategies I would give for things like self-care.

Emily: Those are really helpful and again, no matter where a mom is at, or what she’s dealing with, we all have those moments where we’re like, “I can’t do this again,” or, “I don’t know where to go from here.” You feel paralyzed in that moment, like you said, where you feel everything around you is spinning out of control. I love that you’re on the highway and all these cars are rushing past you and you’re like, “My brain has stopped working” [laughs]. I love that—just praying and savoring what we can.

Laura: And as we wrap up here, what are a couple final words that you would want to share with a mom? Especially here at Risen Motherhood, we have a lot of really young moms who are probably just beginning their journey with a child with special needs. What’s an encouragement that you would want to share with them?

Abigail: Those beginning stages are difficult, and it’s okay for it to be difficult. So one of the first things that I would say is, it’s hard, and that’s okay. You can let it be hard. You’re going to have words for the wind at times, you’re going to have struggles and difficulties, and there’s room for your mess with God. I would also want to say to her, God has not given you a stone. He hasn’t. It might feel like that right now, but he has given you his Son, and along with his Son, all things. So raising the child with special needs may be the hardest, best thing that you ever do. You may be doing the things that no one sees, for the child who can’t say, “Thank you.” But you do not do them just for your child; you are doing them for Christ himself. And so love well because you have been loved so well. My prayer for that mom would be that she would be enabled to walk in a manner worthy of the gospel. So in her grief, in her joy, in her sleepless nights, in the wild behavior that comes, that her life would be poured out as an offering to God. It’s such a beautiful, beautiful thing.

Laura: Emily I think you have no words. I, too, have nothing to add to that. It’s a great place to wrap up with those truths, and just letting them saturate our souls. Abigail, thank you so much for being on Risen Motherhood. We really appreciate you taking the time out to be here, and just to share encouragement with all of us moms.

Abigail: Thanks for having me.