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Cynthia: Our focus this month is on marriage. As we had discussed earlier, my parents would have been married 71 years in August. Last week, we talked about ways to strengthen your marriage. This week we’re going to have a little different focus and we’ll be talking about the ‘what ifs.’ How can you maintain a strong marriage if you face unexpected grief?
The traditional marriage vows say for better or for worse. Well, what if the worst happens? My guests today are Todd and Kristen Evans, and they are both authors and massively well educated. Todd has a master’s degree in Christian education and a PhD in mechanical engineering, and Kristen is a mental health counselor and has a master’s degree in social work.
After they got married, they had a disabled child. We’re going to just talk about how that impacted their marriage and how they maintained their strong marriage. So welcome, Todd and Kristen.
Todd: Thank you so much, Cynthia.
Cynthia: So just so that we can kind of get a background of what happened, tell me a little bit about what your story is with your disabled child. What exactly happened?
Todd: Why don’t you start, Kristen?
Kristin: Well, we had been married almost five years and our son was born healthy, and very quickly became very ill. He began having seizures and lots of medical just baffling doctors, they couldn’t figure out what was wrong.
Long story short we finally found out that he was the 14th case in the world with an extremely rare metabolic disorder. And so that began our journey to save him medically and developmentally. Then three years later, we became pregnant with our daughter, Bethany Grace. And very early on in the pregnancy, we knew something just was not right.
And after a traumatic couple of months, we learned that she has a severe, different rare genetic disorder that is a chromosomal deletion called 5P minus or Creedy Shaw syndrome. And we were told she wouldn’t survive. If she did, by a miracle, survive, she would never walk, or talk, and be severely intellectually disabled.
And we do have a miracle. She did survive. And after three months in the NICU and several surgeries came home and that really began our marriage journey for better, for worse.
Todd: Yeah, the first child was an adjustment for everyone.
We had the extra medical things and, and we managed to get through those and, working together was a challenge. Our marriage had some challenges at that point and a good bit of traditional arguing. But we did manage to get through it. But yeah, that new challenge of our daughter then is what put us to the test and challenged all of our concepts of marriage and what it meant to love and to be together and to support one another.
Kristin: Because you committed through anything, right?
Cynthia: Yeah, I can understand. I have a disabled child, but he is my 5th child. So, tell me a little bit about how this changed your marriage.
Todd: We couldn’t logistically get everything done. We were both working at the time. So, we kind of talked through and looked at it. I was full time. Kristen was part time and just had to say, “We can’t do it. We’ve got to make a change.”
So that was one of the first big changes was Kristen decided to step down from her job. That way she could focus on therapies and helping with the children and all the medical things that were involved. What that took away was the financial piece of being able to have a stable income.
So, it went from a very meager, but adequate income to really struggling. We pushed the envelope every month, trying to figure out how to make ends meet. That just adds more strain on the marriage at that point. So, I think that’s where we saw the biggest issues come about. It was time, money, emotional stress. It’s three of the big areas that really hit us hard.
Kristin: And then we didn’t have time to care for one another. It became a partnership of just trying to keep our daughter alive. Literally, she was on four machines in and out of the hospital. Our conversations consisted of who’s the nurse today? What time is she coming? What appointments do the kids have?
Todd: Do you need me for today? What do I have to do? What’s on my list? It went from enjoying life, watching shows together, going out biking and hiking and, kind of adventure of young marriage and young love to a business partnership. If we don’t nail down the details nothing’s going to happen. And that became the crux of our marriage. And all the rest got pushed aside. Which you can imagine did not lead to good things.
Cynthia: You said that one of the things that you tried to do was to foster forgiveness and trust. What kind of things did you do to foster that?
Kristin: One of the first things was just trying to survive. We were in crisis survival mode. Our emotional connection completely severed. We can talk about it and joke about it now, which we do in the book, but Todd completely just separated from emotions.
In the meantime, I was drowning emotionally from the trauma of the pregnancy. I went into severe depression. We now know from researching from the book, we were experiencing chronic sorrow. I did not have his support processing the daily grind of the medical situation and the chronic sorrow.
One of the first pieces was, I went to therapy. And learned I needed validation. I needed emotional validation. And so that began our journey.
Todd: And I didn’t have time for emotional validation. You can guess that didn’t go over. For me, it was, let’s take care of the business needs of the family. Let’s make sure kids are getting therapy. Let’s take care of our finances. And that’s all I got time for. I don’t have time for emotions.
So, I caused a lot of pain and hurt unintentionally in my trying to care for our family and our marriage and that way and neglecting the other parts.
And that’s where you’re talking about the forgiveness aspect. There was a lot of need of forgiveness for not validating, Kristin.
Kristin: We both did our birds. So, I learned to ask for that validation. And then it was a very slow process. We hurt each other a lot. Very, very painful time and just being willing to begin to communicate.
And say, “you hurt me, I need an apology.”
And I begin to teach him. This is where I need you to say, “That sounds hard. I’m sorry. You’ve had a hard day.”
Todd: So I learned to say, “That sounds really hard. Tell me more.”
Cynthia: Right. Rather than trying to fix it. Right. Isn’t that what a guy would say?
Todd: Exactly. Exactly. Yep. Yes.
Kristin: Then we just learned basically for better for worse. We literally had to recommit to our wedding vows, saying this is what we’ve done to hurt each other. This is how our marriage has almost been torn apart.
Let’s think about our vows: through feeding tubes and ER visits, through OT and PT, through richer or poorer, almost on bankruptcy. We committed to our vows, knowing what the specifics looked like for us.
Todd: And you make some of those commitments and vows and in kind of a dreamy state of this is whatever happens.
It kind of had a crystallizing effect of this is what happened. We had dreams and those dreams weren’t going to come true. A lot of our dreams were tied up and doing things together and being together.
Those were all off the table. Can we exist and love one another still and recommit to this, even if the things that we cherish the most and dreamed about, were taken away?
Cynthia: How do you process stress Todd?
Todd: Well, I had to learn a lot of ways. One of the biggest for me is finding some kind of outlet. So, I got into running. I hated running my entire life. There’s no reason to run unless you have to. I did sports and things. I ran for that, but I just took up running and just said, “I want to run a marathon.”
So, I just went out and ran a mile that day and just slowly built up, It became a goal and an outlet. It was something I could see tangible results in which I couldn’t always see in my family. And it lets stress out and produces endorphins.
For me, that’s one of the biggest things that helped me through some of the worst of it was just having an outlet like that.
Cynthia: And how did you process your stress, Kristen?
Kristin: At first, not very well, as I said, just spiraled when Bethany Grace was young. I’ve learned to practice deep breathing. And I also started exercising.
I was like, well, he can do it. I can do it. And I always hated running. So that’s one of my outlets now too. But just being present in the moment, doing a lot of mindfulness-based stress reduction. You relax your muscles, which calms your nervous system down.
We go get massages. That’s what I get for Christmas, Mother’s Day, and my birthday—gift cards for massages. That is a huge stress outlet. And we’ve learned, which we’re wanting to teach couples to do, it’s incredibly important to de-stress together.
Cynthia: you mentioned mindfulness, stress reduction. Can you give me a little bit more on that? Because that sounds interesting.
Kristin: Yes, the research. I’m a research nerd, and it’s just phenomenal. The mental health and physical benefits that are really coming to light now. So, it’s basically being just fully present in your moment and in your body is the important thing.
And if you go to YouTube. You can type in mindfulness-based stress reduction. You can type in progressive muscle relaxation exercise, and it’ll guide you through basically tensing and relaxing your muscles. It helps calm down that chronic stress response in your body, which causes all sorts of problems.
Tells your brain and central nervous system, you’re not in an emergency, which calms down your emotions. So, if you’re having trouble sleeping, a lot of disability parents experience anxiety and trouble sleeping. I do that. It sort of originates from Eastern religion, but not really if you look back in Scripture.
Cynthia: I can see how tensing your muscles would help you realize this is a tense muscle. This is what it feels like when it’s relaxed. And that’s good to know because you may be tensing and not realizing it.
Is this also part of keeping your marriage strong? So how did y’all do it together?
Todd: We found a way to get away whether it was for one hour as we were able to get support from other family. And we told them how important this was. They helped us to get away from our house and our stressful environment a little bit just for a night or a couple nights.
Kristin: Even five miles away.
Todd: We take a lot of in-town trips. Not a lot, but just one night away or close enough for medical emergencies. But we got to connect. We try to do something special. Like she mentioned, doing a massage together, a couple’s massage at a place or separately going to a spa together.
We neglected our marriage when we’re at our home oftentimes because there are so many demands there. As I’m sure everybody in marriage feels to a large degree it’s very similar in that sense. Just because there’s more burdens there and things to be done.
Getting away and just committing to that time was the biggest thing for us.
Kristin: And it must be getting out of the house. It is very difficult for a lot of special needs parents to get out of the house. But you just can’t relax. Even if you’re in your bedroom watching a movie because you’re still under that stress. Especially women, women have a hard time.
Cynthia: Did you have a hard time finding someone to act as a caregiver?
Kristin: We’re very blessed.
Todd: Yeah, we’re very blessed with our family. My dad and her parents have both been very supportive. Early on, we had someone from our church who volunteered to come over to let us get out for a couple of hours. That was the first time. She was a skilled nurse. We could feel safe enough just to go out and have dinner together.
There’s been other times it’s been difficult to find help and people that feel okay keeping our kids while we get away.
Cynthia: You talk about finding joy together, which is a big part of keeping your marriage strong. How did you do that?
Kristin: We got married to go into ministry together. That’s where our joy would be from, and from being able to go out and hike and bike.
We’ve learned to find joy in the little moments, even the moments that are difficult. So, there may be a really challenging situation with our daughter that we could easily just melt down and cry. And we’ve learned to just embrace the little moments and find ways to make special memories. It’s not about big dreams anymore.
It’s more about just being grateful. Just grateful for the moments and the times that we do have. And then we try to make special memories. But they’re not like huge dreams. It’s just finding joy in, in our life, how our life is right now.
Todd: Yeah. I kind of think of it in two parts. I call them things that, that steal your joy, anger and frustration and jealousy are, are a few of them. She’s talking about the dream aspect. I can’t think about that future. That will never be. I’ve got to give that up and accept that it is or it’s going to keep eating away at my joy and steal it.
If I, keep wanting that thing, I can never have and just give it up, accept it and then replace it with something else. And that’s kind of what she’s referring to is replacing it with joyful things throughout the day. Just having a celebration dance. That’s when, when, when she does something good. Just, just saying, “hey, let’s have fun. Let’s celebrate the little things. Let’s go to bed and have a story together. And let’s just have a good time with it.”
So it’s really about getting rid of things that steal joy and then replacing them with, with positive things here and there.
Cynthia: Yeah, we learned to celebrate the small things because sometimes there’s not big things to celebrate, but we’d celebrate this moment.
You mentioned expressing gratitude. Can you talk about how that helps you to build mental health?
Kristin: Gratitude is powerful, even in strengthening your marriage. And just one little thing a day. Whether it’s just thinking it, saying it out loud, journaling it just writing a little sticky note to each other, saying thank you for, or I really appreciate, it just sparks that positive emotion, and it helps change your perspective.
It’s important to process grief and pain and sorrow, but when we get stuck in that and we think about that all the time, and we don’t turn our focus to, hey both kids are home from the hospital. We’re all here together. I’m grateful for that. Or I’m just grateful for this morning.
I’m grateful that Todd is such an amazing husband. When we focus on gratitude, it shifts our perspective. It makes us more optimistic, especially when we pray prayers of gratitude for God to God for, for what we’re grateful for. It changes emotions. It creates positive emotions, which spurs stronger mental health.
Todd: And it brings us out of ourselves. When you’re grateful for something, your focus turns away from you towards others or God. And just taking that shift away from you oftentimes is enough to just help put things in a good direction for yourself too.
Cynthia: I know you managed to keep your marriage strong. You’ve talked about your broken dreams of what you wanted in your children and for your marriage or ministry.
Have you thought at this point about what you’re going to do together? Because I noticed you have a website. You have books that you’ve published. If you thought about what the future might look like with your 2 children?
Todd: We thought about the future and with children some, but covid made a unique experience for us. She had to quit her job because of medical reasons for our daughter. She couldn’t be out in the jails and ERs. She was a crisis counselor working there. So, she had to come home and, and I decided I want to use my time to help people. So, as you started the website and the blog and said, I want to help moms that are struggling with raising their child with disability.
And God’s kind of grown that, and she was able to devote a lot of time to that at home, and I’ve been able to come in and join, jump in with her and it’s kind of coming full circle back around to our original dreams of being able to be in ministry.
Kristin: Not how we imagined, though.
Todd: Yeah, not how we imagined, but helping people and doing this together. It’s become a new shared thing for us. And just seeing God’s provision. We’ve kind of given up a lot in our lives and just said “if it happens, we’ll be Grateful for it. If it ever comes that we can do something together.”
But it’s not going to be our focus. We’re going to live today. We’re going to do the best life we can today. In the process of that, I have changed careers 5 times. You saw my degrees that I did. I had to adjust because our kids had different needs at different times and different locations. It’s not about me. I’m going to give up those things and do what’s best. And it’s fun to kind of see God coming full circle now, starting to bring opportunities to do things together again.
Kristin: As opportunities come up with speaking, we are getting to minister together again. We originally started out when we got married, both wanting to go into retreat and camping ministry. And that’s where we started out in grad school. Our dream, I think ultimately still is to be able to do retreats for married couples for couples to get away and who have children with special needs to help them.
Cynthia: And see, that’s a wonderful ministry because there are so many couples out there with the same problem and they need the wisdom that you have come around to. So, you’re going to have an open door there. God has a way of using those hard things, while keeping your marriage strong.
Is there anything else you want to add before we close?
Kristin: We just want to encourage other parents who have children with any type of disability, whether that’s medical, mental health, or physical disabilities. One, you’re not alone. There are other parents who are desperately wanting to connect, and we have some resources on our website for how to find support groups in your area.
Two, for couples one of of our goals is to debunk the myth that there’s an 80% divorce rate for parents who have children with autism or disabilities. You can keep your marriage strong. That is totally unfounded. We thought our marriage was doomed, but we just want to say your marriage is not doomed.
In fact, a lot of couples grow stronger and grow closer through having children with disabilities. So, we just want to encourage you to reach out, find support and we’d love to hear from you if we can answer any questions or do anything to help.
Cynthia: Thank you. I appreciate that. Where can I send people to you?
Todd: Disabilityparenting.com.
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