Welcome to A Season of Caring Podcast, where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host. and today our guest is Kelly Johnson. Kelly is the Director of Adult Faith Formation at St. Mary’s of Gostyn Catholic church in Downer Grove, Illinois. It was in this role that she met Deborah Kelsey Davis, who together developed the curriculum Nourish for Caregivers. From this need, they discovered an ongoing ministry need Nourish for Caregivers now has spread to over 78 churches across the United States. Nurse for caregivers supports the practical, emotional, and spiritual wellbeing of caregivers. Kelly’s caregiving experience began in a sudden and unexpected way. Kelly was an advertising executive in three client meetings one day and an ambulance with her son the next, her then five-year-old son was diagnosed with a brain tumor. Surgery, chemo, and radiation therapy launched Kelly’s caregiving journey. She’s continually amazed at the ways in which the good Lord continues to use and stretch her. She lives in the Chicago land area with her family. Welcome, Kelly. I’m so excited to have you today.

Kelly Johnson: 1:13

Thank you, Rayna. It’s a pleasure to be here. Thank you.

Rayna Neises: 1:16

Well, the one thing in your bio that wasn’t there was, we teamed together with the Nourish program and I am such an advocate for that and so if you don’t know about Nourish for Caregivers, you need to check it out We are partnering together to offer online support groups twice a week at 10:00 AM central on Tuesdays and Thursdays. There’s also the amazing Wisdom Series available every other Wednesday night. So check out NourishforCaregivers.com and learn more about all of the great resources that are available for you out there. I’m just so glad to have you here, Kelly, and excited to be able to have you share your story. Let’s start talking a little bit about Bobby and that season it’s been a while ago now, but I know that those emotions as a parent are probably right there.

Kelly Johnson: 2:00

Absolutely. And, and yes, the spoiler alert of all of this is he was five when he was diagnosed and he’s now a 21-year-old, so that’s the good, good, happy ending with it but when he was five, he was diagnosed with the brain tumor. Very unexpectedly. We had been, skipping on rocks and climbing on a waterfall the weekend before, and then his tumor is on the part of the brain that should have controlled this gross motor skills. So there was really no signs that was going on other than, and he was not feeling, had a little bit of a headache. So, and had something that looked like Bell’s Palsy, which sort of gone away. it was where the tumor was resting on the brain. So he wasn’t feeling well. So I took him into the emergency room, figuring he was maybe dehydrated. And that was where, the emergency room doc had said, you know, he’s not responding the way I’d like them to can we do a CT scan and there was the tumor and then salt and pepper all the way up and down his spine. It had metastasized pretty well for him. So that led to the ambulance trip to one place. And it was right before Thanksgiving and the doctor said I’m not comfortable operating and leaving on Thanksgiving. So he transferred us to another hospital and it’s one of those that God works in very amazing and mysterious ways because it gave us two built second opinions. So we didn’t have to wait for anything. And, we had our second opinions right there. And so Bobby went into surgery on that Monday and then, started his chemo and radiation protocol as quickly as he could recover from that and move from there. So that was my caregiving launch.

Rayna Neises: 3:35

Wow. That’s, that’s quite the caregiving launch, for sure. Not only so much to learn on the medical side but just that momma’s heart, so hard.

Kelly Johnson: 3:45

Yes, absolutely. And, you know, through it, we’re very fortunate because my husband was right along with us in all of this. And, there was a lot to learn medically and we worked together as a team very well. One of the biggest hearts in this kind of goes to your comment about a mama’s heart, is that you so easily could look and say, you know, Lord, why me? Why, why him, why us? What, why, why? but we were very blessed that we quickly said there is no why. This side of heaven, we’re not going to see what that, why it was. And that’s okay. So, Lord, this is your path for us. And, while I don’t think you gave this little boy this is where we’re going. And so I know you’re here with us and let’s do what we need to do and be where we need to be. It was such a gift to, I really do believe that, thank you that both my husband and I arrived at that together. So we were just able to move on, and say, okay, Lord, take it away.

Rayna Neises: 4:49

That’s a good point because I think. Human beings in general why is just this huge question and the why seems to hang us up to such a point that can lead to depression and just so many other negative feelings that really learning to realize that you might not know the why and that’s okay. We just have to deal with what we can deal with right here in front of us.

Kelly Johnson: 5:14

Exactly. And that’s exactly what it allowed us to do is that we didn’t look back and we didn’t look forward that we just said, you know what? this is where we’re at right now. And this is what we need to do. Whether it was, me quitting my job, from that three client meetings, I never went back to the office. My husband, he’s a teacher so, coming after school each day and, whatever it was. Figuring out where we are right here and that was sort of where we had to go with it and being able to do that.

Rayna Neises: 5:43

So with Bobby being five, that was right at the beginning of his school he obviously missed quite a bit there in the beginning, not to mention this was a brain tumor. So tell us a little bit about what school was like for him and how you guys handled that.

Kelly Johnson: 5:56

Well, interestingly he’s, a September 2nd birthday. So he missed the cutoff by one day, which was a blessing because that was the year that he went through his chemo and radiation and everything. So he actually was supposed to then start, when he was six, so kind of right after, so he only ended up missing about a month of kindergarten. The kids who were in the neighborhood with him were actually, who was, he was starting kindergarten garden with. We were so gifted and blessed it was a small school so everyone walks to school. Everyone knew us and knew Bobby’s story by that time. And the kids were amazing, amazing, and amazing all the way through school. You know, even in high school, I think the kids always had his back. He was never bullied. Cause I think they knew there was that, you know, that group of kids that were always right there behind him. And also I think he has a really strong guardian angel who was watching, but you know with a child disabilities. Advocating for them in the school systems is something that is often very difficult for parents. We were very blessed with a very proactive, school system and my husband is a teacher so he knows quite a bit about how to go about doing some of that. But advocating for your loved one, advocating for your child is something that is so important to do. That’s one of those things where you certainly have to be in the here and now, but you also have to look forward to, what are the pieces that we need to put in place now so that we can get to this point up ahead. There’s that real balance of being able to prepare in the now as you’re looking forward to the future for your child. And I think with advocating and, putting an IEP plan or a plan in place for your loved one for your child. You really have to make sure that you’re working within the system and getting, the helps and the needs, and being willing to work with all the others is, a big part of that. Keeping in mind what your child needs cause you, you know, that better than anybody else. And being able to express that and having dialogue and opening up for communication, being kind in the way in which you’re approaching things, and being willing to have those conversations and that holds true. Whether it’s. in the school systems or whether you’re talking to the doctors or longterm care facilities, it’s working with them to find solutions and not just poking holes in it and finding the problems. But recognizing a problem sure, but also helping to find the solution to it too.

Rayna Neises: 8:18

Such a good point. And I do think that is one of those hats that we put on as a caregiver that we don’t even realize we’re wearing. And the sooner you realize that advocacy hat is a big piece of what you need to be doing, then the better off it is. So definitely. Realizing that your advocacy has to be one where you’re working together because these are the people who have your loved one in their hands. And so you sent Bobby off to school every day and that’s where he was. And so finding a way to partner with them and really get them to understand the needs. And then, like you said, problem-solving so important as a caregiver.

Kelly Johnson: 8:55

Yes. It’s often a hat that is a big part of what we are, but one that’s often hard to step into. That you do sometimes think, Oh, it’s one more thing I have to do. But it is such an important part. And I think that’s too where sometimes it helps to also find someone to help you with that process. Remembering the dignity of your loved one. Again, whether it’s your child or whether it’s someone in a longterm care facility or it’s with your doctors, recognizing their dignity that they are created in the image and likeness of God, and that gives them inherent dignity. It is a big responsibility too. And to be the protector of that is a big responsibility. But I think it also gives us a little bit of courage. That’s an important component to being able to advocate effectively, is to take all of that into account, and into what we do. The other part of advocacy. I think that is so important. Or I wanted to go with finding one is the idea that, praying for people is being their advocate. And then I think it’s so important that we find people who can pray for us. Especially as we’re going through our caregiving journey. Praying for a loved one, certainly, but praying for us as the caregiver too, is so important. One of my favorite stories and this was a prayer for Bobby, my stepmother’s best friend from when she was growing up, mother went to a Cathedral while Bobby was going through his surgery to pray for him. One of his later surgeries. Now that’s like, you know, seven degrees all over the place, right? Like essentially kindness of strangers, truly. She refused to leave until she heard how Bobby’s surgery went. So it was just one of those where she took her responsibility to pray very seriously. And she couldn’t just go to a church. She had to go to the big cathedral in the big town as opposed to just the close church. She was very diligent about her responsibility to pray. And I think that’s so, helpful and affirming to us as the caregivers at the time to know that someone cared about us. And to pray that was that concerned about it, that she went through all of that to pray for us. And so I think it’s important to recognize how powerful prayer is and to let people know that you’re praying for them or when someone asks what they can do. Please pray for me, not just pray for me, but please pray for me. There’s that difference in it’s not just prayer, that it’s something really powerful and effective.

Rayna Neises: 11:24

Such a good point. And the thing that came to my mind, as you were saying that, is so many times as caregivers we don’t even offer up the need. We’re just in the trenches doing what needs to be done every day and we need it, but we don’t remember to ask for it and asking for help in any way, is hard for most of us, I think. But even that piece of it of just saying, Hey, I could really use your prayers. This has been rough. We’re in a tough season, or we’re going to a doctor. We really need answers. Just keeping people in the loop of your need and being vulnerable enough to say, I could really use your prayers. It is very powerful being able to receive that it makes such a difference. I know just when someone would stop and pray with me, right then also made a big difference to just encourage my heart in the middle of it.

Kelly Johnson: 12:20

Absolutely. Absolutely. And, and like you said, receiving that, whether it’s receiving the prayer, receiving help or something that is often really very hard for us. I think with caregiving, we’re sort of in this position of the ones who do it and we just do what we have to do. And so to be able to take a step back to think about what our needs are, and also to then receive, when someone says, let me help you with that. It’s hard to do. Which brings me to another story. One of the biggest gifts that we received our neighbor across the street knocked on our door, early on and she said, you can’t say no to this. She said, I’m going to set up meals for you, you can’t say no to this and I’m thinking I don’t need meals. I just know we’re fine. Nope, I’ll set him up. It’ll be every other day. It was the biggest blessing because as Bobby was going through his chemo, essentially, we were in isolation, sometimes at home, sometimes in the hospital. So these meals that were put into a cooler on our front porch for such a personal gift from each of the families that were just saying, here’s our favorite bottle of wine? Here’s our favorite dessert? Well, here’s our favorite. We’re thinking of you. We love you. And it was just such a beautiful, personal, personal, personal gift but it was hard to say yes to that.

Rayna Neises: 13:35

Wise wise neighbor, you have to realize that you would say no, but you needed it more than you had any idea. Probably a caregiver who has on the other side of a season that was difficult and knew what it was like,

Kelly Johnson: 13:48

Absolutely. Yep. She’s a beautiful soul.

Rayna Neises: 13:51

You know, as caregivers, I think we are always on the lookout for who we can help, no matter what part of the season we’re in. And there’s caregiver hearts and there’s non-caregiver hearts. And there really are a group of people that are good people who really love us, but they don’t have that caregiver. They aren’t zoning in on the need. And so they just need a prompting sometimes they need you to say, Hey, could you just pick up the medication while you’re at the store? Just those simple little things that really can help us that we think of, because that’s just how we’re wired, but not everybody does. And that’s not a bad thing. It’s just a different thing. As caregivers, we think everybody’s the same as we are. They see the same things we see, even as an advocate sometimes that’s one of the things that I had to learn as a caregiver is to say, okay, let me introduce you to my dad. Let me teach you who he is and tell you about him as a person. Honestly, my heart was, let me help you fall in love with him so that you will take care of him the same way you would take care of your grandpa or your dad or whatever. And as an advocate, there’s a delicate way to do those things. And there’s a bully way to do those things. And my instinct was oftentimes to be a bully in the beginning, to be honest with you, cause it just seemed like why don’t they see it? Why don’t they know, why don’t they realize? And they don’t know, they don’t realize because they don’t know him. Especially in the beginning and so helping them to learn and introduce who he is and what he needs. and how they are there to help him. Really made all the difference to help him.

Kelly Johnson: 15:24

One of the things that we did with Bobby, So of chemo where we basically were going in for inpatient once a month and then it ended usually being twice a month because he’d get an infection halfway through. But once a month we knew we were going in so somehow we decided they needed to be themes. Like we’re going to the Amazon jungle and we’d bring things to stick on the wall or bugs or trains or something. And in hindsight I realized that also started to make the staff they’re aware of Bobby as a person, as you know, we’re on the Peds floor. So certainly I was a little boy, but as this particular little boy, my little boy, our little boy, and it was fun too because they’re pediatric doctors and Oncologists. When Oncologists rolled up his legs because he was coming into Bobby’s swamp. So he needed to come you know and were able to play along with that. and then it was something that Bobby could look forward to. Not many kids look forward to going to the hospital, but he did because there was going to be a theme and something exciting. He often thought that the parties were all in the playroom or for him. We were very fortunate in that, but that was part of being his advocate is showing that this is a little boy here. In a very different way, sometimes when they’re a child, as heartbreaking it is when they’re a child, but also as you express with your dad, to show, this is who he is, this is what he loves. This is what will make him happy. Even in this craziness, you know, there’s, there’s him there, in a powerful way. He’s there.

Rayna Neises: 16:51

I think that’s our number one goal, as an advocate is to help people see who we see and then to get them on board with us to be able to get what we need for the ones that we love.

Kelly Johnson: 17:03

Right, right, absolutely.

Rayna Neises: 17:05

Well, Kelly, thank you so much for joining us today and talking about advocacy. I think like you said, it’s a hat that many of us as caregivers, it’s there, we just don’t know it’s there, especially in the beginning and we might not be comfortable with it. And so I think your, just really great in helping us to think about ways that we can put that hat on. And like you said, come alongside of those who are working with us and not try to be overbearing with that advocacy, but rather invite them in, let them be a part of the team, and get our needs met. So, thank you all the work you’re doing with Nourish for Caregivers. Again, listeners, if you have not checked out Nourish For Caregivers, I can’t emphasize that enough for you to visit their website at NourishforCaregivers.com and find all the great things that they’re doing to help support you as a caregiver, emotionally, practically, and spiritually, really taking care of the whole person who is in this important role. I also want to make you aware of Deb and Kelly’s book The Caregivers Companion: A Christ-centered Journal to Nourish Your Soul. It’s a beautiful journal with amazing prompts to help you think and process through your journey of caring. So definitely visit NourishfoCaregivers.com and find The Caregivers Companion online at amazon.com as well as Ave Maria. If you haven’t checked out the Encouragement Series yet, and you want to be sure to do that. Kelly and Deb will be one of our presenters. They will be presenting on, Get Real: HELP is Not a Four Letter Word. It will be a great presentation. We’re really looking forward to that. EncouragementSeries.com to get signed up. It’s a free online series. We’d love to have you join us. Just a reminder. A Season of Caring podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please contact your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation