Wherever there are shadows, there are people ready to kick at the darkness until it bleeds daylight. This is Bleeding Daylight with your host, Rodney Olsen. Welcome to today's episode. You can find and follow Bleeding Daylight on several social media channels. Links and contact details as well as more episodes are available at bleedingdaylight.net. Today's guest shares a heartbreaking story.
It's one of compassion and deep love and one that challenges each of us to care for the most vulnerable people across our world. It's a mother's story that combines joy, pain, disappointment, love and a deep faith. I know that you're going to enjoy getting to know my guest and you'll come away with a better understanding of the impossible decisions some people need to make. Today I'm sitting down with someone whose story is profoundly moving.
Karol Holmes has walked a path few of us could imagine, adopting three children with profound disabilities, navigating decades of complex medical care and facing impossible decisions that would test anyone's faith to its core. Through years of caring for her son, who was deaf, blind and medically fragile, Karol discovered an eternal perspective that carried her through the darkest valleys.
Her journey challenges us to wrestle with deep questions about suffering, sovereignty and what it means to love when everything feels impossible. Karol, welcome to Bleeding Daylight. Thank you so much. I'm so happy to be here.
I know that our conversation today will only scratch the surface of Karol's story, so I'll mention right at the start that links to her beautifully written book, Grace According to Gifts, and her website, which contains a wealth of resources, are now at bleedingdaylight.net. But Karol, back in 2001, you had four biological children aged from three to eight. Most people would consider that you would have already had your hands full, but God had other plans.
Take me back to that time and the decision you and Jim took to care for that stunningly beautiful baby with the soft black curls. We were pretty much just going about life. I say we were living the American dream. Had two boys, two girls, had a strong marriage. We were running a business. Pretty much thought we had things figured out, I think. The Lord has a way of humbling all of us, doesn't he? He did that for us.
Basically, we received a phone call asking if we could be a host family for a child who we knew he was very ill. He was coming on a private jet from Haiti with a group of other kids. He was coming to have open heart surgery and then go back to his biological parents in Haiti. However, once he got here and his heart was repaired, I do have a medical background, and I just had a bad feeling about this little baby's name is Moise. I just felt like something wasn't right. We did some more testing.
The results of the tests were pretty devastating. We had figured out during the time that he was with us that he was deaf. He wasn't hearing anything. But then we found that he had severe brain damage. Basically, he had a vision impairment. At that time, he was not blind. He lost his vision later on in life. But he was deaf. He had cerebral palsy, a cognitive delay. They really couldn't tell us what kind of a future we were looking at. And then he had just a host of different medical issues.
They couldn't really tell us what kind of future we were looking at. They did tell us that he would probably never walk. And most likely, they would probably never talk because he was completely deaf. They just couldn't really tell us. He didn't know, you know, will he ever be able to lift his own head? Will he be able to feed himself? They didn't know. His biological mother did not want him to come back just because of the lack of medical care in Haiti.
There was really no hope for him in Haiti. But suddenly, we were faced with this very overwhelming decision of this short-term little thing that we were doing, this kind of feel-good thing we were doing, suddenly was, are you going to adopt this child and raise him? We knew that it was going to completely upend our life, taking care of this child that had so many medical issues. And it was just a really, really hard decision.
The choice had kind of been made for us when God just brought him to us. Here's this baby born in Haiti, and God uproots him from poverty and brings him to this little tiny town in the Midwest and puts him in our home. I like to say love had to come first for us because if somebody had asked us previously, would you adopt this child with all these complex issues, it wouldn't even, there's no way. There is no way we would have even considered it.
That was the point that I came to realize that God puts one person in front of us. He doesn't put a nation in front of us. He doesn't put a whole community or even a whole village. He puts one person in front of us and says, care for this one. And that's what he was asking of us. So we did it. We adopted him. It changed the entire trajectory of our life.
What sort of discussions did you have with your children at this stage about, hey, we're going to have a new little brother with all the complexities that that brought? What sort of conversations were you able to have with them at their young age? Our youngest biological child was three. We had a son that was three, a daughter that was five, a son that was seven, and a daughter that was eight. The littler ones were like, oh yeah, we're going to keep this baby.
They had no idea what we were signing up for. They just loved this little baby that we had in our home. But my oldest daughter, we have a facility about seven minutes from our home. It's a residential placement for adults with developmental disabilities. And so she had been around some, and she just was like, I don't want a brother like that. And we had kind of decided that if there was anybody in our family that wasn't on board, then we were not going to do it. We kind of were like, well, okay.
But then a few days later, her name is Jamie, and she came back, she whispered into my ear, I think we should adopt Moise. And so we had a little bit more of a conversation about, you know, how it would change our life. And they were on board. Of course they couldn't know how it was really going to affect their life. We didn't know how it was really going to affect our life. The kids didn't know of just the emotional turmoil that my husband and I were going through in making this decision.
Once we made the decision, we just went into it and fully embraced this new life that we had. We couldn't do a lot of things that other families could do because we had a very medically complex child in our home. We spent a lot of time in the hospitals and surgeries, endless surgeries. It was difficult to navigate it, but my husband and I are a great team. I like to say that hard times reveal things in us.
It probably reveals a lot of not so good things, but it did reveal that he and I could do really hard things together, and we stuck together, and we kind of developed this communication that we didn't even need words for. We just knew what needed to be done, and we did it. The kids came along, and they were very much a part of that with us. I like to laugh and say, my five-year-old could do G-tube feedings like a seasoned nurse.
I know that along the track, there was another couple of children that then entered your home. How far down the track was that? Yes, we adopted Moise in 2001. In 2007, another little girl was actually born locally. Her biological mother had been life-flighted to a hospital here near us. She had Down syndrome, and the mother had said, even before she gave birth, that she's not keeping this baby.
A few days after she was born, they called us, and we adopted another one, a little girl with Down syndrome. Unfortunately, her name is Jelaine, and she passed away when she was two-and-a-half in an accident in our home. That was devastating, and it was very traumatic for our children. There were a few really dark years there while we navigated that. Again, my husband and I were very united. There were a lot of spiritual struggles there, but we got through them.
A few years later, we get another call, a little boy with a very rare genetic disorder. His birth parents were Liberian, but he was born here in the United States. He had been in the hospital. He had never gone home from the hospital. He had a perforated bowel. He had open-heart surgery. He had a genetic disorder called Jacobson syndrome. He has, like, two genetic things going on, Jacobson syndrome and trisomy 9. I know of three reported cases in the world of this genetic disorder.
So we had no idea what kind of a future we were looking at with this little baby. Nobody could tell us anything. At that time, I was a little hesitant. I was still maybe holding a little bit of anger because my daughter had died, and I thought if I was going to adopt another child, I wanted a child with Down syndrome because that was what we had lost. But my husband very much felt like we could love this baby. We adopted him.
Cruz, I like to say, was kind of like redemption because he is just a beautiful, beautiful, happy spirit. He's 13 now. His cognition is that of about a 2- to 3-year-old. I refer to all of our adopted kids or any kids with intellectual disabilities as eternal children because that is essentially what they are. They remain children for their entire life. That's how all of our adoptions came to be. It's been a crazy, awful, wonderful journey.
I want to dig in a little bit more into the story of where things went with Moise. But before we go there, I'd just be interested in knowing where your faith was. For you and Jim, in those early days, obviously you were hearing from the Lord, which is why you first took on Moise as a baby. But what was faith like for you and how did it start to grow as you went through some of these trials and storms? My husband and I met in church. We were both raised in wonderful Christian families.
We both had foundations of faith. I accepted the Lord when I was 15 years old and he was, I think, maybe 19. We married young, attended the church that we had attended our whole life. It's kind of hard for me to describe because if I go back and look, I loved God. There was a lot of talk about God in my home, but I don't remember a lot of talk about Jesus and having a personal walk with Jesus.
But when these really, really difficult things started kind of washing up on our shore, we didn't have anywhere to turn. We didn't have, in our social circle, we did not have anyone who had children with very, very complex medical needs. We felt like fish out of water. There was just nobody that we could talk to that could even begin to relate what life was like in our home.
Just the endless medical needs, the endless hospitalizations, and trying to navigate for typical developing children through it all. It just was very lonely and very isolating. I think that's when I really started to just cry out to the Lord, Lord, I'm alone. I need you. I cannot do this. I cannot do this in my own strength, and I need you. Then when my daughter died, we were really, really broken. I was broken, and I'll be honest, I didn't handle her death well.
I didn't handle the grief well in the first few years. I was in a really dark place, but I could feel the arms of the Savior around me. No matter how dark it was, I knew that He was with me and that He was going to use it for something good. One of the ways that I really felt the comfort of the Lord is between my husband and I, we could have pointed fingers. We could have blamed each other. Nobody in my home did that. Everybody blamed themselves. It was an accident.
Nobody was really at fault, but that felt like comfort from the Lord. She drowned in our home. She drowned in our backyard. It's so rare for something like that to happen, and nobody blames anybody. Nobody was angry at anybody. For me, that felt like the Lord, like just this gift from Him. I feel like that's when I really needed a personal relationship with Him. Around the time of my daughter's death, like a little bit before, I had started prayer journaling.
I know a lot of people do meditation, and I kind of tried some of that, like scripture meditation. It just didn't work very well for me because I'm a very type A personality, and so my mind just would kind of go everywhere. I started writing out my prayers and prayer journaling. That honestly was life-changing. Back then, there wasn't a lot of talk about lamenting, but now that I look back, that is what I was doing. I was lamenting to the Lord.
Every time I would go and sit with my prayer journal, I would start in lament, and inevitably it would turn to praise. I often say that I'm thankful. I rejoice in the tribulations that God has brought to us because that is how I came to this deep, deep, I call it a love affair with Jesus. And we certainly see that pattern in the Psalms. There are so many Psalms where it is a lament.
That was really your experience of coming to know Jesus more personally, and I suppose taking those things that you would have given mental assent to in the past that became very real for you. It was a demonstration not just for you, but for your whole family. Then we move forward, and the issues that Moise had didn't just stay there. Things continued to progress, and there was more difficulty. Tell me about that journey. Pretty shortly after we adopted Cruz, Moise lost his vision.
We had used sign language with him because he was deaf, and he lost his vision. Not only did he lose his vision, he also lost his most effective means of communication. That was a turning point for Moise. He became angry. He was angry with his lot in life. Moise was a little bit of an anomaly because even though he had all these things, he had a higher IQ. I don't know what his IQ was because we couldn't really get one, but it was clear that he had a higher IQ than anybody really thought he did.
For example, he did learn to read Braille. That kind of is a testimony to how intelligent he was. I don't look at most disabled people and think that they are trapped in their body, but I did feel that way with Moise, and he just was really struggling. He became angry. A very important piece to this is that Cruz, he's very small in stature. When he's seven, he looks like he's three. He's the size of a three-year-old. He had a severe bleeding disorder.
Moise became angry and aggressive to the point of violence. We had a deadly combination in our home with one who is violent, throwing furniture. He would get himself out of his wheelchair and he would army crawl across the room and he would grab your legs out from under you. He was big. And so if his arm got around my arm or on anybody's arm, it was like a death grip and he wouldn't let go. He would throw his head against you and headbutt you.
And so for Cruz, a blow to the head could potentially be fatal with his bleeding disorder. Things got really, really bad when he was about 17 years old. By this time, all of our biological kids had moved out of the home. They had gone off to college or wherever. My oldest daughter was married. We had a grandchild. She wasn't able to bring the grandbaby over much because it was like somebody would flip a switch in Luis. For about 18 months, it was kind of like a living hell in our home.
None of us was safe. The school that he was attending, he was in a school for kids with severe and profound disabilities. They would not allow him to come to school anymore because they had a very vulnerable population and he put everybody at risk. That was the only time really in our marriage where we were reaching a breaking point. Usually there were times where Jim would be strong, if I was weak, and vice versa.
At this point, we were both weak and we both were to a place of, we cannot do this anymore. We became very, very aware that there is a tremendous lack of services for adults with developmental disabilities. There are all kinds of services for children, but once a disabled child ages out of the school system, which in the United States, that's when they're 22, they are terribly underserved and there is a lack of services and there is no help for families.
This led you to having to make a very difficult decision, didn't it? There was a point at which you thought, we love Moise, but we need him to be in a place where he can get the care that he requires. We needed him to get the care that he needed. We needed him to be safe. I needed to be safe. Most of all, Cruz needed to be safe. And that was a very difficult place because I felt like I was having to choose between my two children.
But the problem was, even if I made that choice, there was nowhere, there was no one who could help us. I made numerous police calls. We made 911 calls. And what would happen is, we would go to the hospital and he really didn't have a medical problem. And so they couldn't admit him to a medical floor. But because he was nonverbal, he could not be admitted to a psychiatric floor. We were just in this cycle of going to the emergency room and getting sent back home.
And they would say, well, we can't help you. We can't do anything for you. And I would beg, somebody has to help us. We were appointed a team called the Crisis Support Services Team. They were supposed to be helping us, figure out how to manage the behaviors. And then also, they sent referrals to every facility in the state of Illinois, helping us, trying to help us find a placement.
And no one would accept him because if you have intellectual disabilities and a dual diagnosis with intellectual disabilities and either complex medical needs or intellectual disabilities and behavioral issues. And Moise had all three of them. We may have a facility that could handle his medical needs, but they then have a vulnerable population, so they couldn't handle his behavioral needs and vice versa. There was no help.
They had recommended to us, so this is the state-appointed crisis team, that what we were probably going to have to do would be to take him to the emergency room and refuse to leave with him. I mean, it's just absurd that the crisis team, this is what they're telling you, you have to do. And I just was like, there's no way that's ever going to happen. But we got to a place where it had to happen.
We had a close call with Cruz and we knew that if we didn't take some drastic measures, we could potentially regret it for the rest of our life because something was going to happen to Cruz. One Sunday morning, we had gotten to where we couldn't go to church together. We were taking turns going to church. We were like, I was a prisoner in our home. I couldn't go anywhere. I couldn't go out in public. We couldn't take him out. Jim took Cruz to church that morning. It was his turn to go.
Not a half hour after he left, Moe's exploded and it was not safe. And I called 911 and they took him by ambulance. The same thing happened. There's nothing wrong. You need to take him home. And I said, I can't take him home. And they were like, well, he's not our problem. You have to take him home. There's nothing we can do for you. And I said, somebody has to help me. Of course, I was hysterical by this point. The doctor said, if you do not leave, we will have you escorted out.
I just was like, well, what am I supposed to do with that? And I had called Jim and I had called our crisis team. They said, lock out and leave him there. And I did. I walked away and left my 23-year-old deaf, blind, nonverbal, nonambulatory, cognitively impaired son sitting on a stretcher in the emergency room at the hospital. And it was the single hardest thing I've ever done in my life. An incredibly tough decision. Where do things go from there?
Because obviously, they're now left with the decision of where do they go? What happened with Moe's at that point? For 24 hours, I didn't know what was happening. We didn't know anything. But then the hospital director and the director of behavioral health called. And once they heard our story and how long we had been struggling, they kind of got behind us. Essentially what happened was Moe's had to be declared homeless in order for us to get any services.
They did an emergency placement in a state-operated developmental center, which at the time we were relieved because we were told it would be a short-term placement to stabilize him and then we would be able to bring him closer to home. It didn't happen. They did not stabilize him. The state-operated, it is exactly what it says it is. It's a government-run facility. But it was our only option.
And the whole time he was there, we struggled with knowing we needed to get him out, but also knowing we had to protect crews. And it was just four and a half very, very dark years. This time of waiting and pleading with God and getting no answers. But eventually we did get an answer. We had a devastating situation happen and I begged a facility to take him, one that was very close to our home. We were able to get him to this facility that's seven minutes from our home.
He was there for seven months and then he developed aspiration pneumonia suddenly, unexpectedly, and in three days he was gone. And he was set free of his body. Such a difficult road to go down. This man now, who you've obviously loved from his childhood through all this time, having to make decisions that from the outside could seem as uncaring, but obviously the most caring that you could make. And I'm sure that you were wrestling with that. How did God draw close to you during that time?
Because I know that that would have been difficult. But as I say, there are decisions that the rest of the world could make judgments on, but you were the one in that situation. You were the one that knew that something needed to be done and action needed to be taken. How did Jesus draw close to you in that time? It was seriously the darkest time.
And I have buried two children, but this four and a half years was the darkest time of our life because it felt so inherently wrong to not be taking care of my own child when I knew He wasn't getting the care that He deserved. I also knew that I had to keep Cruz safe. I came to a place of realizing that Moise was eternal. And instead of seeing him as an eternal child, I began to see him as an eternal being. And the Lord just impressed on me that it was a season. We all have seasons in our life.
We have hard seasons and we have good seasons. And Moise's whole life was kind of a season of suffering, but he was eternal. And one day he was going to be in heaven. I had no doubt, not a doubt in my mind about that. It was just a daily surrendering him back to his Creator and recognizing that Jesus loved him even more than I did. A lot of times I didn't know what was happening. He's two hours away from us.
During that time, COVID happened and we did not lay eyes on him for eight or nine months. But it was just constantly surrendering him. And I prayed three things. I started praying during COVID, don't let him die up there alone. Get him out of there. And then eventually that prayer turned to set him free, whatever that looks like. Whether it be healing, whether it be getting him out of what kind of felt like a prison to us, or setting him completely free of his body.
The amazing thing is God answered all three of those prayers. He brought him home. He set him free. And our whole family was holding him when he took his first steps in heaven. That eternal perspective is something that even those of us in the church, I don't believe spend enough time thinking about. That the afflictions that we have in this lifetime are momentary compared to eternity. And yet when we think of things with that eternal perspective, that this isn't all there is.
And in fact, this is just a small part of what there is. It changes everything. Have you spent much time thinking about that day when you are reunited? Reunited with Moise, free of all the disabilities that hold him back and being able to just hold him? I cannot wait for heaven. I have two children there and I can't wait to see him. I was his eyes, his ears, his voice, his legs. I was his everything. Losing him is kind of like losing a limb. He went everywhere I went and I was his everything.
Now I think about the fact that he knows so much more than I do. And I am so in awe of that. His darkness is now light that we can't even imagine. He never heard me say, I love you. And now he's hearing Jesus saying, I love you. He never took an independent step. His first independent step was in heaven. I personally think Moise touched so many lives while he was here that I think there are going to be a lot of people waiting his table when they get to heaven, including me.
I will be waiting his table in heaven. As I said at the start of our conversation, I know we're only going to scratch the surface. And part of your story is written in your book, Grace According to Gifts. I know that you have intentions of writing some more. At what point was that book written? Where did that come along the timeline? My second book is actually going to be released here very soon. It's called Only Jesus Knows, Loving the World's Most Vulnerable.
A few months after he died, I knew that I had to tell his story because I don't feel like the world knows how many families there are that are suffering because of the lack of services for adults. People don't understand that when children age out of the school system, developmentally disabled children age out of the school system, there is not a lot of help. And there are thousands of hurting families. They kind of disappear from society.
They disappear from our churches because they can't take them out. And so these families are in every community and they're hurting and nobody knows they're out there. Moise's story was so extreme, but I know I have walked families through this whole having your child declared homeless. I have walked that journey with other families. I know that it's happening and I just can't be silent. Looking back, I can look at this whole story and say, Ah, God, I see. I see what all this was about.
I understand why he had to be there for four and a half years. I understand why we had so much darkness because I can peel back the blinds on this and make people, help people understand. And Jesus, he had so much compassion for the underserved and the marginalized and the lame and the crippled. And yet there doesn't seem to be a lot of ministry or mission for adults with developmental disabilities.
I think everybody thinks that the government is taking care of it and the government is not always taking care of this. Jesus Christ is the answer. And we, as the body of Christ, need to be the hands and feet of Jesus to these people. This is how we disciple. We disciple these people by being the hands and feet of Jesus. I had my adult kids. I had support. Jim and I had each other. But there are a lot of single moms out there who don't have that.
When we say we're pro-life, are we really pro-life or are we pro-fetus? Do we ever stop to think about that mother that's going into having an abortion and we stop her and say, don't kill that baby. Do we ever stop to think what happens to that brain-damaged baby? It grows up to be a very difficult child. The financial strain is huge, potentially violent, and she can't care for it. There are so many stories of Jesus caring for the blind. We all know them.
We have the paralyzed man who was lowered down to the roof. We have the man at the pool. We have so many stories, and those all showcase Jesus' mercy and compassion. As His followers, why are we not showing that same mercy and compassion to our most vulnerable individuals?
There's some big questions there that I think is going to take a while for people to consider, and I know that there is some good work being done, ministries to people with disabilities, but far too few, far too few right across the world. It really is a case of are we taking the Scriptures seriously about caring for all, as you've highlighted here? I know that you have a lot of resources on your website. It's just the starting point.
As you've said, you have walked alongside a lot of other people that have been in difficult times, and I'm sure that you would be okay with people contacting you, so those links are in the show notes at bleedingdaylight.net. Again, we've only scratched the surface, but there's a lot more in the books that you've written, also on your website, so people can find that help.
But Karol, I just want to say thank you for the inspiration that you bring, and I know it's only because of Jesus, but thank you for your story, and thank you so much for spending time on Bleeding Daylight today. Thank you so much. I really appreciate you letting me share Moise's story. Thank you for listening to Bleeding Daylight. Please help us to shine more light into the darkness by sharing this episode with others. For further details and more episodes, please visit bleedingdaylight.net.