Take Heart

Tips For Strengthening Your Marriage While Raising Special Needs Children : An Interview with Kristin & Todd Evans

• Amy J Brown, Carrie Holt and Sara Clime • Season 3 • Episode 125

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On this episode of Take Heart Special Mom Podcast, Carrie M Holt welcomes Todd and Kristin Evans, who share their personal struggles in their marriage while navigating their lives as special needs parents. Both Todd and Kristin emphasize the importance of self-care, reflective listening, and validation of emotions between spouses. They stress the need for open communication and finding ways to navigate ongoing grief as a couple. They also reveal practical skills they learned through therapy that can help couples navigate the unique challenges they face. This episode offers valuable insight and support for those struggling with the demands of caring for a special needs child while maintaining a healthy and happy relationship. 

Ep.125; April 25, 2023

Key Moments:
[5:49] Todd and Kristen’s different experiences with grief
[12:40] Sharing feelings and being vulnerable is important in dealing with grief 
[17:49] Spouses react differently to grief 
[20:20] Support is key
[21:23] Practice reflective listening in your marriage. 
[25:56]Managing the stress together


Resources:
Disability Parenting
Kristin & Todd on Instagram
Kristin’s Facebook Group

If you enjoyed the show:

Take Heart is supported by our listeners. We may earn an affiliate commission when you buy through links on our site.

Kristin Faith Evans
When I tried to share how hard my day was, how much I was struggling, he felt like there wasn't time for emotions. I was struggling, so I shut down.

Carrie M Holt
Welcome to Take Heart, where our goal is to offer encouragement, give hope and insight so you are flourishing in your journey as a special needs mom. As we explore monthly themes, share inspiring stories and practical tips, our desire is that you are connected and encouraged. Todd and Kristin have been married for 21 years and have two children with rare genetic disorders and complex needs. As award winning authors and speakers, they're passionate about empowering other parents of children with chronic illnesses and disabilities, and professionals serving caregivers. They both earned their masters in Christian Spiritual Formation at Wheaton College, and have served together in full time ministry in church, camping and retreat settings. Kristin is a Licensed Master Social Worker, experienced in couples, child and family, substance abuse and crisis counseling. They enjoy traveling and the outdoors together. You can connect with Todd and Kristin and learn more about their ministry and resources at www.disabilityparenting.com. 

Hi, there, everybody. I am here today with Kristin and Todd Evans. I am so excited to have you guys here on the podcast. First of all, if you could each tell us a little bit about yourselves.

Todd Evans
Sure, I'm Todd, one-half of Todd and Kristin. We've been married 21 years together. We had dreams of starting off in ministry together and kind of pursuing that. We started off that way. 
This special needs journey has changed some things in our life and our direction. We were talking about it this last week that we probably had between us at least seven career changes over the last ten, fifteen years here, trying to meet the needs of our family. For me personally, I've been in ministry full time for about 12 years, but then changed careers and went back to school. I got my engineering degree, and have been a professor at a university. I run a diesel delivery business now, that fits better with our family needs, an online retail business as well. Plus, I'm trying to work with my wife on writing a book, while squeezing in time to run and take care of our kids. That's a little about me.

Kristin Faith Evans
I'm Kristin. In addition to that, I'm a full time care coordinator, and I'm a Licensed Master Social Worker, passionate about mental health and caregivers. The Lord just opened up this opportunity during COVID, ironically, to speak, and write and bring things full circle for us.

Carrie M Holt
It's so exciting and we'll hear more about this book that you guys are working on at the end of the podcast. Can you tell us a little bit about your introduction into the world or special needs parenting, honoring that your kids are older and they're in a different part of their journey? 

Kristin Faith Evans
It started when our son was a baby. I knew that something wasn't quite right, and he quickly became very ill.  That began our journey to save him medically and developmentally. He was diagnosed with the 14th case in the world (known case) with his specific metabolic disorder, which caused a lot of complex needs. That's where our journey began. We felt like we had been through a very difficult time. If someone had told us it was preparing us for a more difficult journey, I don't think we would have been very happy or believed them. When our son was three, we became pregnant with our daughter, Bethany Grace. I knew very early on in the traumatic pregnancy something was not right. Three days before Christmas, we received the news that she has a severe chromosomal deletion called Cri-du-chat Syndrome, which began her lifelong journey of being a medical survivor and developmentally, exceeding everyone's expectations. She's 13 now.

Carrie M Holt
How old is your son? 

Kristin Faith Evans
16. 

Carrie M Holt
We're walking through all of that with our teenager, too. It's very interesting, the world of special needs and all the teenage stuff on top of it. 

Before we continue our podcast today, here's something you should know. Have you preordered The Other Side of Special: Navigating the Messy, Emotional, joy-Filled Life of a Special Needs Mom? If you preorder our book, you will get a free copy of the audiobook and some other amazing pre-order bonuses. Our book would also make an excellent Mother's Day gift. Order today on Amazon, Baker and other online retailers. If you have any questions you can go to our website: www.takeheartspecialmoms.com/books. Now let's get back to the podcast. 

We're going to focus a little bit on the topic of grief today. I know that's a passion of yours. It's a passion of mine. It's something we write about in our book, I would like to hear each of your unique perspectives and how you approached grief. Todd, do you want to start with that?

Todd Evans
Sure, I'd be happy to start. For this, we're talking about our daughter, Bethany. For us. It was hearing the news about it and overwhelming and traumatic. We couldn't believe this was happening to us. How could this be? What did this mean for our lives? What did it mean for her, a real shock? The grief was the news of her diagnosis and everything was very dramatic, very overwhelming. We both felt it together and experienced it together, worked through it together, kind of leaned on each other quite a bit. That experience of that first part of grief was one that we shared and was a unifying experience for us. It was us against the world in some ways. Then, as we moved through the pregnancy, into the birth and delivery, that's when our paths really diverged with the grief experience. As we got into the daily life of trying to care for our daughter and our family and take care of that, our experiences really started to differ quite a bit at that point. For me, the grief was very much I would say suppressed, kind of moving past it almost. 
The daily turn of life was so incredibly hard. We were involved in setting up oxygen concentrators, doing feeding pumps, doing pulse-oxes, doing all the medical equipment, taking care of her plus time to work full time, in the midst of all that. For me, I had to really settle down to an almost business-like transaction where if I didn't take care of the daily needs of life, our family wasn't going to survive. The grief became something that was really an afterthought. I didn't have time to deal with grief, I had to move on and really focus on helping our families survive is what I felt like, for the most part. It was very quick, we'll deal with it, let's move on, we got things to do. We got a family to save, and a daughter to take care of. That was kind of my experience.

Kristin Faith Evans
Yeah, and I was drowning. I was coming off severe trauma, from the pregnancy and delivery, which a lot of moms have with medical kiddos. In addition to that, I had quit working. I was home full time doing the midst of the caregiving during the day, going to the appointments, very devastating news at appointments, going into medical crises, driving her back to the ER, being at the appointment seeing other kids her age at the hospital, who are typically developing. Daily, experiencing waves of grief. Watching Todd and how he reacted to me it was like there was something wrong with me. I thought there was something keeping me from just getting over it. I felt invalidated when I tried to share how hard my day was, how much I was struggling. As we've gone over this and talked about it, he felt like there wasn't time for emotions. I was struggling, so I shut down. That is when the separation between us emotionally, the grief and the stress began to drive that wedge between us because we didn't know what was going on with the other person and what that was doing to our marriage. Just now, even in researching for the book, we've had an aha moment of oh, that's what was happening. Disability parents experience what's called chronic grief. The grief process is different. The model doesn't fit our experience.

Carrie M Holt
Yeah, for sure. You talked about how it drove a wedge between you two, so when did that kind of come to a head, and what have you learned from that, in relating to one another?

Todd Evans  
Yeah, it was more than a year into our daughter coming home from the NICU that it came to a point that I kind of realized that if we kept on like this, there was no way our family was gonna survive. This was tearing us apart. Yes, we may be taking care of the day to day things struggling to get by, but there's no way we can sustain this level of energy, this level of commitment and dedication to the task while ignoring the emotions and surviving long term. I'm a very scientific based person with evidence and things like that. It was when the evidence piled up enough that our marriage was gonna die, if we didn't change, then that finally, hit me hard enough to say, "Is my marriage important? Are we going to continue down this path or are we going to make changes? That was a really hard time, and there was already so much damage that had happened in over a year's time period, it was gonna be a tough process to dig it out and to deal with the grief. That was kind of when it came to a head at that point.

Kristin Faith Evans
We went to marriage counseling. We knew at that point, we were not going to be able to resolve this on our own; there was a lot of hurt. Finally, another piece of that, which it's gonna sound bad about Todd, but we've worked through this. He did not see my need to go for mental health therapy. I was very much in a deep dark depression, which can happen to one in three special needs parents. That began to drive a deeper wedge between us. 
It was at that point he said, "Okay, I'm sorry, you were right, you definitely need to go for mental health treatment. I'm willing to go for marriage counseling." It wasn't so much what we did, or what we learned; it was one night, Todd basically said, "I haven't given up on us, I'm not going to leave you."  That recommitment to, we're in a bad place, but with God's help, we're committing to stick this out and get through this together.

Todd Evans
It wasn't so much dealing with the grief at that point, but dealing with life that  had come to that. The grief aspect of it, we had to deal with to move forward. That wasn't the primary motivation and driver for us. It was more about realizing we were at the end of ourselves and we had to have something different. In that openness, to be willing to share that with one another, it was the start to a new process. That's also something we really feel is critical to dealing with grief. So often we're hiding it below the surface, we're ignoring it, we're not willing to share those feelings, we feel guilty about it. 
We don't have time for it sometimes. One of the biggest pieces of dealing with that grief is to get it out in the open - to be able to talk about it, share those feelings, feel the validation from your spouse. That's kind of where it started to happen; that openness to say something out loud. I really kind of got things kicked off and started rolling towards the healing process, which was a many, many year process. It wasn't overnight. Continue dealing with those differences in grief and realizing more about the other person, where they were coming from, what they were feeling, and why they reacted the way they did. For Kristin, she really didn't understand how I can emotionally disconnect and why I did it. After explaining to her, it was for our family. I didn't know how else we could do it. We're financially strained. We're doing all this stuff. I don't see any other way to do it and move forward. She started to understand me better and why I made that choice. It wasn't necessarily the right choice for our family, but she was able to see why. Because I was able to share that reasoning out loud to her, and she was able to share with me about the deep pain inside that she was having and struggling. It wasn't just okay, this is a diagnosis; It's over. This is something I go through every day. This is what I hear in the doctor's office. I see it when I look at other parents and families. I started to understand her. That's really the core of for us is really sharing out loud kind what that is and be willing to be vulnerable in that way with each other,

Kristin Faith Evans
Then, extend each other grace.

Carrie M Holt
I think it's true that you said grief is isolating. A lot of times, especially as special needs parents, we feel so much shame with it, because we haven't actually lost our children. We look at other families that have lost children, and we say, "Oh, well, we don't have a reason to grieve," which is complete nonsense. I think what you said about ignoring the emotions and moving on, can be so dangerous, I think admitting and speaking it out loud, and then being willing to share with one another is so good. As you've been further down in your journey, how do you continue to talk to one another about grief? It looks differently, right? In different parts of your journey. It's chronic, as you said, Kristin. It's chronic, it's ongoing. We're never going to lose this grieving journey with our children. It's not going to happen really. 

What's the word of advice that you would give to our listeners, who are maybe further down in their journey, and they've understood it, and they're dealing with it, but it keeps coming up again?

Todd Evans
It's gonna keep coming up. Even this year, it's been a hard year for me with a chronic aspect of grief. Our daughter turned 13 in January, developing into a young woman, all the teenage hormones and everything, but she's still two or three-year-old. It's a painful thing in some ways to know that's never going to be what we hoped for our daughter, to have a family. As she grows into this young woman to blossom and start her own family and things like that, there's a grief of not being there. At the same time, I was talking to Kristin last week that I've been so busy with work and things like that, I feel like we haven't had much time to read bedtime stories to our daughter, for instance. That's something that I may not have this other thing, but what I do have is that she's still gonna love bedtime stories for the rest of her life. I can spend every night doing so. A piece of dealing with the grief is not to focus on what's not there, but what joy, what good things you have and the blessings that you do have, replace them with something that you are blessed with, because you have blessings. 

Kristin Faith Evans
I think as our children get older, we start to go to those future milestones, more. I'm not going to be looking at colleges. Focusing on wherever you are in your grief journey, just the present day. We have to plan for our children, but at the point you've done the planning you can do, going back to finding simple joys in the day as Todd said: all the special things about Beth that bring joy. Wherever you are in your grief journey, also allow yourself the permission to feel those waves of emotion that come up and validate yourself. It makes sense, you're feeling this and not feel guilty for wishing our daughter was going out with friends, or having sleepovers. Allowing ourselves to feel those emotions and validate that and then also validating that in one another. When he brings up this is hard. Sounds like that's hard. Yep, it's hard. Reflectively saying one another's emotions. We're going to have different reactions to different events. That's what we're learning. It's hit him this year. 

It's kind of hit me for the past four years when she started in middle school. We're gonna have different events, or we may not even be able to figure out where that emotion came from. One day, the emotion of anger or jealousy, or grief comes up. Realizing we're on the same journey together, the two of us, and we're experiencing it differently, how can we support one another, and connect in the midst of it?

Carrie M Holt
What I hear you saying is that it's okay for you both to react differently to grief. It's important to share and connect with each other. If you could go back to the beginning of when this started, and honestly not that we wouldn't necessarily change it because you've grown and learned and changed. If you could give somebody else a word of advice, who maybe is starting this journey, especially as a married couple approaching it as a team together, what's one thing you would tell them?

Kristin Faith Evans
I mean, as you said, we've grown and we've grown closer together through this. However, we'd like to help other couples avoid the pain and the deep pit of mental health that we went through. One thing we would do differently, which is critical for disability parents is, have more support. We were very blessed to have the support of family and a couple of friends. However, we did not join a support group, for several reasons. There's lots of reasons that disability parents do not join a support group. That probably would have helped guide things in a different direction. Go to marriage counseling sooner than we did, instead of waiting until our marriage was on the edge of despair. Definitely that support is critical.

Todd Evans
I would say that's one piece of it. You asked for one thing, but maybe there's a couple. One piece is realizing your spouse cannot be everything you need, and give them that freedom to not do that. That you need other people, friends, support groups that can do some of those things, and God to fill the voids that your spouse and others can't fill because that's what God does for us. The other thing kind of internal to the marriage, I would say, is really listening to one another. Giving that time to hear one another, not just talk, but to hear. She mentioned a minute ago about reflective listening, that's a simple technique you learn in how to do conversation. Maybe you've done that, as a parent, you're teaching your child to do reflective listening. Even repeating the question, oh, you've had a hard day. Yes, it was a hard day. Tell me more about it. I'm terrible at those kinds of things.

Kristin Faith Evans
You've learned. That was one of the things that turned their marriage around. When Todd learned how to start validating me. It's very powerful. It's simple. It's so powerful, because you feel heard.

Todd Evans
When I was able to validate and to listen, and she was willing to share more, and to reach out more. Then that helped trigger something inside of me, that made me more empathetic, and realized some of those emotions in my own self, because I heard her saying them. That's really, one of the biggest things I would say is just be willing to spend that time.

Kristin Faith Evans
Set aside a special time every day, even if it's just five minutes to check in and ask questions, not try to be heard, as opposed to try and make sure you're heard. Only asking questions.

Todd Evans
For us, that really happens after getting the kids down for bed. Coming home from work, you can't talk, you're not in the mood for it and you're still exhausted at the point after you get everything set up - all the medicines, given everybody tucked in and all that. Committing to saying, before we turn the TV on or anything else, let's just talk for five minutes. Making that a habit could make a huge difference. I think that would have been probably the biggest advice to ourselves back then.

Carrie M Holt
I was going to ask you how you did it. I'm so glad you answered that. I think sometimes we think, five minutes. Why bother with five minutes? It's not that big of a deal, but it is. Five minutes is okay. That's huge. I love how you said that you ask questions not in order to be heard, so you're willing to listen and that reflective listening. I love how you talk about the therapy piece. We actually have been covering that in the podcast in the month of March for the podcast. I actually had a friend text me last night that her son officially got a diagnosis. They have known it. We know the differences between official and waiting. She said , "Listening to your podcast gave me the courage to go to my husband and say, I need to see a counselor now and not wait." I think that's huge. Share something along those lines or something else that you're learning right now as you're in process that you'd like to share with our listeners.

Kristin Faith Evans
Yeah, mental health is huge. One in three, one in five who have a medically fragile kid or have had one medical event, meet the criteria for post traumatic stress disorder. I'm a mental health research nerd because that's my passion, but the more I read about how one spouse having mental health symptoms impacts the marriage; that is a huge piece to strengthening your marriage. Even if you don't have mental health (anxiety, depression or any other symptoms), if you have a child who has any kind of additional care need, you're going through any grief, the stress, you can benefit from counseling. 

Marriage that's not having problems can go for prevention and for strengthening, even if you feel like you're doing okay. I'd say one of the other huge factors in making your marriage strong and resilient, is managing the stress together. It could look like you're literally doing something together, or you're supporting one another's self care. For example, doing something together, hugging and deep breathing for one minute together. It is powerful, the physical and emotional stress reduction, and the closer you feel, that's one example. Take a hot eucalyptus shower together. I'll let Todd talk about how it may not be managing stress or coping together, but encouraging one another's self-care

Todd Evans
First of all, when she said hugging together for one minute, that feels really weird. I thought, "what are you talking about? Why would we do that?" I was like, okay, we've got to write a book, I gotta at least try this.

Kristin Faith Evans
We can't put it in the book if we haven't tried it. That's our rule.

Todd Evans
We tried it out; it was a little awkward at first. It's amazing how syncing and breathing and being together and connecting there, slowing down life for one minute, can make a difference. So try it. That's something simple that you can do in one minute.

Kristin Faith Evans
Try 30 seconds, if one-minute feels too long.

Todd Evans
One of the biggest gifts she gives me is allowing me time to go out and run. That helps me deal with stress; it gets my mind off work, issues at home. I'm able to either go out to see the creek next to me and be able to meditate as I run, or think through other things in my head, be able to think while I'm running, or check out whatever I need that day. A lot of times, she'll just come home and say, "I've got dinner started, go out for a run." Go out and do something. For me, that's a huge gift. I've been able to do that. That helps me to get through a lot. Those kinds of self-care things can be big pieces for getting you through life every day.

Kristin Faith Evans
And for strengthening your marriage.

Carrie M Holt
It's funny that you were talking about that with the hug thing, because I have noticed lately. 

We have four kids and our kids are getting older, and our oldest is almost twenty. but I homeschool. I feel like I'm so drained at the end of the day that I rarely touch my husband. I rarely hug him. The funny thing is they've noticed when I do hug him, there's just this sigh of deep breath that comes out of both of us. I never thought about it like that, so thank you for sharing that. Because I do think sometimes, again, we discount that the smallest moments of 30 seconds or a minute of touch or talk or connection can really last us. It gives you that connection to keep going and all of that. Would you like to share a little bit about your upcoming book and also where our listeners can find you on social media. I loved recently seeing you guys ran a race together, I think.

Kristin Faith Evans
That's another one of our stress outlets, but doing a goal together and then encouraging one another. It accomplishes a lot of goals.

Todd Evans
Yeah, we did one where we traveled away to a different city, and we're able to get away for a couple nights. Luckily, we have great grandparents and nursing that helped get us out to do that. That experience of being out together and that adventure builds those memories and those long lasting things that you reflect back on. Even this weekend, we did a family race together, a little 5k. We had six of us out: the grandparents, the kids, and us. 

Kristin Faith Evans
It was Bethany's first. Even the nurse did it too.

Carrie M Holt
We've taken nurses to races before too. We're also a running family also. I love that.

Kristin Faith Evans
We are bursting to talk about what we're working on. We went to therapy, marriage counseling twice over the years. it was helpful, I'm not going to discount a therapist who doesn't have any experience in helping parents who have children with disabilities. It is extremely helpful. But, we found that there's this gap in the literature and resources for married couples who are caring for children with disabilities. There's some great books out there that we're seeing in terms of practical...we call them supplemental marriage skills. We face stressors and unique challenges that other parents don't face. We discovered we didn't have those skills. We kind of stumbled through it for a decade. We've come to these skills that work, through my training. The book is not all research language. I want to not scare people away, but it's based on research. These skills that we need to develop as couples caring for our children.

Todd Evans
We desribe it as, most people are out in the typical world, you're traveling down the road in your car. As special needs parents, we compare it to being dropped off in the middle of the wilderness, and expected to survive and make it, without survival skills. Most people don't have that background of wilderness survival skills that they need to really even make it, much less to thrive in the world. That's how we're looking at our book and have the theme throughout it is: What are those survival skills if you've been dropped off in the wilderness, that you need to really make it day to day and eventually get to a point where it's healthy and enjoying the beauty that's around you in the place that you are.

Kristin Faith Evans
We're not shy in sharing our raw, worst moments to give people hope. This is how we went from this pit to loving life together,

Carrie M Holt
You and I have been communicating back and forth. One of the statistics that's floating out there is, 80 to 90%, of marriages with kids with special needs, ends in divorce. You gently corrected me and said, "I've done this research, and it's not actually out there." I think when we are predisposed to thinking a certain way, we assume that that's how life is going to be. I agree with you that there's a huge gap. There's a huge shortage of practical resources out there for couples who are saying, "We're committed to each other, we want to do this. We want to make this work. How can we actually thrive and not be two strangers living side by side in this journey?" I think that's so important.

Kristin Faith Evans
When you see this statistic, you think, Oh, my marriage is doomed. Why? What's the point? There's no research that shows that. I'm still trying to figure out where that statistic even came from. It does show researchers don't agree on the statistics. It's based on lots of factors, lots and lots of factors. They do agree on one thing, that our marriages do face extraordinary stressors in comparison to families who don't have kids with disabilities. That's kind of the focus, we take. You're at greater risk for marital strain. You're at greater risk for mental health. These are the ways you can help prevent that strain. Trying to do that in a very conversational way, just like we're talking now, in the book.

Carrie M Holt
Where can our listeners find you on social media?

Kristin Faith Evans
We have a blog, with different articles on www.disabilityparenting.com. That's where you can find us on Instagram, @Disabilityparenting,

Todd Evans
We're doing some speaking engagements in different places around the country this year and last year. Some of those get posted as we go, but we put those on our website and our blog so you can see those too.

Kristin Faith Evans
I also have a Facebook moms support group called Disability Moms Living Strong and the focus is faith and mental health and practical, encouraging resources to integrate faith and mental health as we seek to be resilient as moms.


Carrie M Holt
When can we expect this resource to be out or just the general timeframe?

Kristin Faith Evans
Right now, Baker books has projected that the book will be released in April or May of 2024.

Carrie M Holt
Awesome. All right. Well, thank you so much for being guests on our podcast today. I know everything that you've shared today is going to be so encouraging to our listeners. I'm very grateful to both of you.

Kristin Faith Evans
Thank you so much, Carrie, for inviting us. 

Carrie M Holt
All of our resources, including an entire written transcript of this episode is available on our website: www.takeeheartspecialmoms.com. There are also links to anything we mention in the show notes of this episode.