Stephanie Daniels welcomes her good friend and colleague Mary Grace Burkey back to the podcast for a heartfelt conversation about two significant topics: marriage and disability. Mary Grace shares her story of meeting her husband Chad at a Joni and Friends Warrior Getaway, which supports Veterans and their families. Chad sustained a traumatic brain injury while serving overseas, which left him with a disability. When they decided to get married, Mary Grace became not only Chad’s wife, but also his caregiver. In this episode, Mary Grace shares about her marriage, caregiving, practical ways the church can support couples navigating disability, and how disability has challenged her and Chad to depend on Jesus in their weakness as they grow closer to one other.
Stephanie Daniels welcomes her good friend and colleague Mary Grace Burkey back to the podcast for a heartfelt conversation about two significant topics: marriage and disability. Mary Grace shares her story of meeting her husband Chad at a Joni and Friends Warrior Getaway, which supports Veterans and their families. Chad sustained a traumatic brain injury while serving overseas, which left him with a disability. When they decided to get married, Mary Grace became not only Chad’s wife, but also his caregiver. In this episode, Mary Grace shares about her marriage, caregiving, and how disability has challenged her and Chad to depend on Jesus in their weakness as they grow closer to one other.
November is National Family Caregivers Month. Across the United States, nearly 53 million people serve as caregivers to family members, friends, and others in need of care. If you or someone you know is a caregiver in need of support, you’re not alone. Here are some resources that will meet you with encouragement and help:
Joni and Ken and Tada share Secrets to Good Caregiving: Spiritual Taproots and Practical Steps and a behind-the-scenes look at their marriage in Joni and Ken: An Untold Love Story.
Listen to “The Caregiver’s Journey: Surviving to Thriving” on the Joni and Friends Ministry Podcast.
Read the Care for the Caregiver devotional.
Consider attending a Joni and Friends Marriage Getaway or Warrior Getaway to meet the specific needs of your family.
KEY QUESTIONS:
How can you provide respite and encouragement to a caregiver in your life?
How can your church and community care for military families when a serviceman or woman returns home from duty?
KEY SCRIPTURES:
Isaiah 41:10: “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
2 Timothy 1:7: “For the Spirit God gave us does not make us timid, but gives us power, love and self-discipline.”
Crystal Keating:
This is the Joni and Friends Ministry Podcast and I’m your host Crystal Keating. Each week we’re bringing you encouraging conversations about finding hope through hardship and practical ways that you can include people living with disability in your church and community. As you listen, visit joniandfriends.org/podcast to access the resources we mention, or to send me a message with your thoughts.
Stephanie Daniels:
Hi, I'm Stephanie Daniels, and I'm so glad you're joining us. I'm excited to sit down once again with my friend and colleague, Mary Grace Burkey. Last week, Mary Grace joined us to share about our Joni and Friends Warrior Getaways and the beautiful work that takes place at these events in the hearts and the lives of Veterans, caregivers, and their families. Mary Grace began serving with Joni and Friends 25 years ago, first as a volunteer and now as the Senior Ministry Operations Manager where she oversees the planning and execution of our Texas area Family Retreats and Getaways.
She first met her husband, Chad, at a Warrior Getaway, which serves Veterans who've sustained a visible or invisible injury from war. Chad became disabled after he sustained a spinal cord injury while serving overseas in the military. Today, Mary Grace is opening up about marriage, caregiving, and how disability challenged her and Chad to depend on Jesus and their weakness as they grow closer to one another.
Welcome to the podcast Mary Grace, I'm so excited. Let's start with, wow, 25 years. How did you first hear about Joni and Friends and get started serving?
Mary Grace Burkey:
Thanks, Stephanie. It's good to be back again. So, when I was just 11 years old, I was serving in the special needs ministry within our church. The senior pastor had a daughter who was significantly disabled, and she was a part of that ministry. His family told me about Family Retreat because they were going to attend that summer, and that was my first introduction.
Stephanie Daniels:
Okay, so I'm just curious. You started serving at 11. How old do you have to be to serve at a Family Retreat?
Mary Grace Burkey:
Well, you have to be at least 16, but back then it was before they had all those rules.
Stephanie Daniels:
Wow. Okay. And so, you celebrated your 25th year of service at a Family Retreat this past summer, right?
Mary Grace Burkey:
I did.
Stephanie Daniels:
What was that like?
Mary Grace Burkey:
It made me feel a little old that 25 years have already passed, but it was amazing to see the impact that Joni and Friends and disability ministry has had in my life and that it pointed me in the direction of not only service to other people, but also a career path. Because I've been on staff with Joni and Friends Texas for nearly nine years now.
Stephanie Daniels:
That's incredible. Has serving people living with disabilities always been something that’s been important to you? Or was that something that you felt called to before learning about Joni and Friends?
Mary Grace Burkey:
Back when I was just 11, I saw the need for disability ministry within the church that I was attending. The senior pastor of our church had a daughter with disabilities, and I saw that people weren't stepping up to care for her on Sunday mornings. So, a lot of times her mother was caring for her instead of being able to participate in church.
So, I volunteered to care for her and to spend time with her on Sunday mornings. I was just drawn to disability ministry when I was very young.
Stephanie Daniels:
I think that's so incredible. And that's one of the things that I love about you, how you love and serve everybody. It's just always so fun to watch you in action. Okay, tell us about Chad. How did the two of you meet? And what initially drew you to him?
Mary Grace Burkey:
We first met at Warrior Getaway nine years ago now. It was his first time attending one of our getaways. I was drawn to his positivity, to his positive outlook on his disability. Chad's disability had recently become more severe after he had suffered a series of strokes, but he wasn't letting that slow him down at all. He was out there at Warrior Getaway, connecting with other Veterans, laughing, joking around, making the best of what most of us would think was a devastating situation. So, I was really drawn to his positivity and his outlook on life.
Stephanie Daniels:
Also, I want to say he's pretty easy on the eyes, so that probably didn't hurt either.
Mary Grace Burkey:
Haha! It might have had just a little draw in there.
Stephanie Daniels:
No, but also Chad has a fantastic personality, and I love the two of you together because you're constantly laughing.
I've heard Joni and Ken share that they didn't really know the full extent of what their marriage was going to look like with disability involved. And you've always had a, a kind of built in care for that when you see disability and when you see other people living with disabilities. So, when you and Chad first considered marrying each other, what thoughts did you have? I know you said others were more concerned than the two of you were. So, did either of you have reservations related to caregiving or Chad's traumatic brain injury?
Mary Grace Burkey:
The funny answer to that is no, I really wasn't concerned. And I think a lot of that goes back to my experience of serving with Joni and Friends for so many years leading up to meeting Chad. I had a lot of disability experience, and I was very comfortable around people affected by disability. And so, it didn't seem like a challenge to me. It just seemed like an opportunity to love another person, while at the same time meeting them where they were in life. I was excited to start living life with Chad.
Stephanie Daniels:
I love a good love story, and this one is giving me all the feels. So, what is something you love most about Chad?
Mary Grace Burkey:
Definitely top of the list is his sense of humor. A lot of times people will say, "In difficult situations, you'll laugh so that you don't cry." And that is true a lot of times when you're living with someone who has a significant disability. There are often difficulties that arrive or challenges that arrive. We never know when he'll end up in the hospital again, when he might have a seizure, or need another surgery. So, his sense of humor helps carry both of us through that. He can always make a joke or find the silver lining in the midst of those challenges, and it makes life so much easier.
Stephanie Daniels:
He really is a fun guy. I love the ability that he has to stay joyful and keep laughing. So with that in mind, what does a typical day look like for you and Chad? Cause I know you can't really prepare for the unexpected sometimes with all that he has going on.
Mary Grace Burkey:
They start very early. In order to get everything done in a typical day for us. We get up quite early, usually around 5 AM. The day starts with Chad’s medication routine. He's on multiple medications to sustain his life on a day to day basis. Therapy at home, helping him get dressed and prepared for his day. And then I move on to my day so that I can head into the office and work for Joni and Friends. So disability ministry is a part of my life at home all day and in the office. Then we usually have three to four appointments every week for therapy, doctor's appointments, blood appointments. So we are on the go, quite a bit. We spend a lot of time in the car together.
Stephanie Daniels:
God bless you for getting up at 5 AM every day. That's one of the things that I also love about you is your joy. Because when I see you early in the morning, you're always ready to go, but it's cause you've been up for 5 hours, so.
Mary Grace Burkey:
I'm halfway through the day already.
Stephanie Daniels:
Oh, my goodness. Well, a few months back we interviewed Emily Curtis and one of the stories in her book, "Hope in the Mourning" comes from a wife who is a full time caregiver of her husband, who's a heart attack survivor, and he also lives his life with the results of a severe stroke, amongst other things. And she talks about the difficulties that come with his daily outburst of anger and yelling, his inability to remember or do ordinary everyday things. I know that Chad lives with a traumatic brain injury, and he also has had multiple strokes, which have led to seizures. How do you manage your own emotions when the day feels really intense, especially while you still have to work and take care of your daughter? How do you still have fun in your marriage and not be so overwhelmed with life?
Mary Grace Burkey:
I think the first answer that comes to mind is just leaning into the Lord for that strength. One of my favorite verses that I memorized way back when I was a kid, didn't realize I would carry it this far into life with me, is Psalm 97:1. "The Lord reigns, let the earth rejoice." And that's it. There's no other directive in that verse. It doesn't say let the earth rejoice when life's going your way. Or let the earth rejoice when you're having a great day and your husband is functioning really well. The directive is just "The Lord reigns, let the earth rejoice." And so that verse is in the forefront of my mind every day of my life. No matter what the circumstances, no matter what the challenges are. If Chad's having seizures or if he's having difficulty walking that day, the Lord is still reigning in that moment. He has control of every moment of our lives and his direction to us is to rejoice in that. So, that's where I find a lot of joy in our day to day is we've been told by God, he is in control. We just rejoice in every moment that we have together.
Stephanie Daniels:
That is such a good reminder to all of us for the perspective that we keep. Looking at our life through the lens of scripture, knowing that in all seasons, in every circumstance, the Lord does reign.
I know a lot of times people see themselves as a caregiver first and a spouse second, and they lose their identity in caregiving. So, how do you find joy in caregiving, Mary Grace, and not lose the fire and passion that you once had for Chad?
Mary Grace Burkey:
I think one of the keys to that is to keep in our focus that our marriage is a relationship, that I'm not just there to take care of Chad every day, and he's not just there to rely on me for that care.
We focus on our partnership together. We make decisions together. Like you said, we have fun together. We love to have fun together and to laugh and then we try to keep the caregiving as a secondary in our marriage. It still has to happen, and it's still my responsibility to do those things, but we really focus on our relationship with each other and then the caregiving comes in behind that.
Stephanie Daniels:
I think that's really, important, because I think that caregivers can get lost. Caregiving can be so overwhelming and so hard, but I love that you guys prioritize the joy and the love first. It's not taking up 95 percent of your life and your time together, even though it is a big portion.
So, Mary Grace, I'm just wondering if there was somebody who was considering getting into a relationship with somebody who is living with a disability. Do you think that there's characteristics that they might need to have as a caregiver?
Mary Grace Burkey:
I think all you need in situations like these is just a heart for other people, a heart that loves the Lord, a heart that loves caring for people. Living with a person with a disability can have a lot of stigma around it. It can have preconceived notions of what that would look like and how difficult it is. But someone with a disability is no different from someone without a disability.
Thinking that someone with a disability is so different from us and requires such a different level of person to be with them. I just don't like that idea. We're all people. We're all deserving of God's love and God's grace, and we're all deserving of love from another person as well. So, I don't think that you have to have any really strong personal characteristics to be in a relationship with someone with a disability, it's just loving someone as you would want to be loved as well.
And, you know, Stephanie, that question was about choosing to be in a relationship with someone with a disability and that is not always the case. Oftentimes someone will suffer an injury, or in Chad's case a stroke, that leaves them with a disability later in life. So, it's not something that they're born with. It's not something that was expected in their relationship. And so, people find themselves in a relationship and now disability has entered into that relationship.
But God has given us a remarkable ability to adapt to those situations. And so, for people who are caregivers not by choice, they didn't take that on at the start, they became a caregiver through the life that God had ordained for them and the things that happened after they were in their marriage relationship, God is always there to meet us in that moment. He gives us the strength that we need. He gives us the wisdom that we need to be able to navigate those situations. When we lean on him during those challenges, it's not as overwhelming as it would seem from the outset.
Stephanie Daniels:
That's so good. Trusting the Lord sounds like the one characteristic that we need to have. Not to box everything into characteristics, but that relationship with him and trusting him, leaning on him in those situations. Cause I know my mom was thrown into caregiving for my dad who lost his vision when I was 16 and at that point they'd been married 30 years.
This reminds me of something I heard Steve Bundy, our Senior VP of International Ministries here at Joni and Friends, who's also a father of a son with disability, he has shared, "Disability impacts everybody at some point in our lives." At some point it comes along, but I think trusting the Lord anchors you in the midst of whatever comes.
So, we've mentioned that Chad lives with a traumatic brain injury and he has also suffered multiple strokes. Could you give us a little bit more insight into Chad's journey with disability?
Mary Grace Burkey:
Yeah, so Chad was originally injured when he was part of Force Recon, the Special Forces Division of the United States Marine Corps. He was injured originally in a parachuting accident where one of his fellow Marines landed on top of him when they landed on the beach at night. It was dark, they couldn't see each other, and he was struck as soon as he hit the ground. Those Marines land at speeds in excess of 25 miles an hour. So, imagine a 200 pound Marine hitting you at that speed in the dark when you weren't expecting it.
That injury fractured 14 of Chad's vertebrae when it took place. As a result of that injury, it damaged an artery in the back of his neck, and that's where Chad originally suffered his first series of strokes, was when that artery finally dissected several years after that original spinal cord injury.
Once he had suffered those strokes, that's when doctors discovered that Chad has a genetic blood clotting disorder called Factor V. That disorder is what continues to cause Chad to suffer strokes when we least expect it. So today that Factor V continues to affect Chad's everyday life. We have to monitor his INR, which is the thickness of his blood, we monitor that multiple times a week to try to prevent him from having another blood clot and suffering another stroke.
So it's just a part of his daily life now, where we are at the doctor's office, getting blood draws multiple times a week, waiting to hear back from them to see what his INR is, how thick or thin his blood is each week, and then balancing his medications accordingly. So, it's a, it's a balancing act and just a part of our everyday life that we closely monitor to keep Chad alive now.
Stephanie Daniels:
That's incredible Mary Grace. Just hearing the seriousness of what you guys live on a daily basis, I'm always blown away with how you can handle such challenging situations with grace. And not just in your own life, but in the lives of these other families that you minister to. So, thinking about all that you deal with I know that you guys recently experienced some pretty harrowing moments as it relates to Chad and his health. You and your daughter kept him stable until paramedics arrived at your home. And we know that the fatigue and challenges of caregiving can be significant. How do you find rest and respite? And what's your advice to other spouses in caregiving roles whose experience might be similar to yours?
Mary Grace Burkey:
So, Chad and I are very intentional about the time that we spend together. Caregiving does take up a lot of my time on a daily basis, but we really focus on our relationship, like I mentioned before. And a lot of that takes planning. I'm very intentional about planning how we're going to spend time together and where we're going to spend time together so that we can focus on our relationship and not just the caregiving.
It requires a lot of pre-planning to make sure that he has the medications he needs. To ensure that we're going to a restaurant that's accessible for him, or one that he will enjoy the atmosphere while we're there, so that he's not feeling stress or anxiety in that circumstance, so that we can just focus on time together, and not on the caregiving aspect of our relationship and I really encourage other caregivers to focus on that as well.
It's so easy to get lost and overwhelmed in just the day to day and just making it happen and keeping everybody alive sometimes, and it's hard to remember, to step back and just enjoy moments of peace together, moments of focusing on each other and not just on the labor of love, but to enjoy the love that you have in your relationship.
Stephanie Daniels:
So, Mary Grace, just in hearing your story, I feel like there is something that a lot of couples can face when they're in a situation similar to yours, that there's a risk that caregiving can become your identity. What are some practical ways that you keep your identity rooted in the Lord?
Mary Grace Burkey:
You're so right, Stephanie. It is really easy to get caught up in that caregiving and it's easy to feel like that's the full focus of your life. But looking back at the journey of my life, of how the Lord brought me to this place of caregiving, that he used disability ministry in my life to prepare me for this opportunity. I can just see his hand in my life preparing me for where I am today. So, taking time to intentionally spend time with the Lord, to lean into him, to seek his wisdom in my life, to seek his will for what my next steps are going to be.
Being a part of your church community is such a big part of that for us as well. It's easy to become isolated when you have a disability or you're a caregiver and you have those two things combined. So, staying rooted in your church community, spending time with your fellow brothers and sisters in the Lord, seeking their support and supporting them, takes a lot of the focus off yourself.
Remembering that your identity is in Christ, that he has led you to this point in life, whether you chose to be in a relationship that's affected by disability or whether you ended up there after you were already in the relationship due to an accident or illness, the Lord has shepherded us every moment of our lives leading up to where we are today, and finding that strength in him and that hope in him, knowing that this is where he has placed you in life, really brings us joy in the circumstances that we find ourselves in.
Stephanie Daniels:
Can I ask, how can the church come alongside families and couples living with disability who may not be able to come to church and get plugged in because their disability keeps them from doing so?
Mary Grace Burkey:
That's a great question, Stephanie, because we have a hard time going to church at times because of the sound, and the lights, and the crowd, and sometimes it's just too much for Chad to be able to participate. So, we have just found so much community in our church reaching out to us. Small things like streaming your church service online so that people who need to stay home can still be a part of that.
Inviting a family affected by disability to be a part of a small group in your home can oftentimes be so much more accommodating to their needs when the big crowd of a Sunday morning is not accessible to them. Just including them, remembering that they exist, because you can feel isolated as a caregiver. You can feel isolated as a family affected by disability, when you're not able to participate as you would want to, or as you used to be able to prior to that disability coming into your life. So, reaching out to people in your community affected by disability. Reminding them that you know that they're there, that you love them and you care about them, and trying to make some accessible opportunities for them, like those small groups, or just inviting them over for dinner when they may not be able to attend church service on a Sunday morning.
Stephanie Daniels:
Thank you so much for sharing that. I always love finding practical ways that we can step in and serve those around us. So, Mary Grace, how has God revealed himself to you in your marriage with Chad and maybe what's been one of the most rewarding experiences or lessons learned?
Mary Grace Burkey:
I think that God shows up in our lives every day just by providing the strength that I need in the caregiving journey. There are times where you don't want to get up again in the middle of the night, where you don't want to go to another doctor's appointment. You just want a break, or you just want to be able to sleep in one time. And the Lord is always there for me.
I truly find joy in this journey that I'm in. I've truly found joy in my relationship with Chad. I've truly found joy in the caregiving opportunities that the Lord puts before me every day. So, the strength that I find in the Lord. He's never let me down. I've never felt like I can't go on one more day. I've never felt like the Lord's deserted me in a challenging situation. I just draw my strength and my joy from him every day.
One of the most rewarding things that we found is the opportunity to encourage others. The Lord just time and time again has put couples in our paths who are in similar situations where one of the spouses has a disability and the other one's the caregiver. We cherish those opportunities to encourage them, to share similar experiences and to show them that there's hope in this journey that disability is challenging, and sometimes it gets harder, those disabilities can grow and progress and you have to adapt and grow with those things, but there is so much joy in the life that the Lord's given us. And we love to encourage other couples when we encounter them.
Stephanie Daniels:
I love that so much. And I just hope that someone listening today is encouraged to know that God is no respecter of persons. He strengthens you, Mary Grace on the daily, and he will do that for another caregiver out there who may be feeling burnt out or at the end of their rope. God is so faithful, and his joy truly can be your strength, no matter what you're facing.
In our last conversation, we talked a little bit about our friend, Ed, who has really been impacted by Warrior Getaway. Could you maybe share an impactful experience that Chad has experienced at Warrior Getaway.
Mary Grace Burkey:
Absolutely. I think the first word that comes to mind is camaraderie, just the friendships, the community that he's built over his time attending Warrior Getaway, that has carried on into our personal life at home.
The amazing volunteers that come serve at Warrior Getaway, they're in it to win it. They are there to serve with their whole heart and not just for the five days that they're at the getaway. We have volunteers from Warrior Getaway who have become lifelong friends of ours. They're pretty much like our family. And Chad has found so much community in that atmosphere. Guys that'll come over and pick him up and take him to lunch, visit him in the hospital after he's had surgery. The community that he has found at Warrior Getaway has been life changing. And I know that it is for all the Veterans that attend.
There's such a great opportunity to build relationships at a Joni and Friends Getaway like that and to meet other people who have shared similar life experiences. I think that's one of the biggest rewards that comes from it.
Stephanie Daniels:
That is so incredible. If you are listening and you're a Veteran and you want to experience that same community and camaraderie, it is available to you at one of our Warrior Getaways. You can visit our website to find a getaway near you. It will bless and encourage your life.
Mary Grace. What a pleasure it's been sitting down and chatting with you. I love hearing your love story. Thank you so much for joining us on the podcast today to open your heart about marriage to Chad and encouraging our listeners who may be in a similar season of caregiving.
Mary Grace Burkey:
Thank you so much, Stephanie. It was good to be back with you.
Crystal Keating:
Thank you for listening today. For more episodes, find us wherever you get your podcast and be sure to subscribe. We’d also love it if you would tell a friend. And for more encouragement, follow Joni and Friends on Instagram, Facebook, or YouTube. And visit our website at joniandfriends.org/podcast. Thank you for listening to the Joni and Friends Ministry Podcast.