Mother of a disabled child honors his life through advocacy

Hey everybody and welcome back to Qualified, the place where incredible people share their stories of overcoming great adversity and loss to inspire you and give you hope. I'm Michelle Heaton Well, working in a male dominated military environment for most of my career, exposed me to my fair share of colorful language and references to shipboard experiences that sometimes made me laugh, and many times went right over my head. But it was the sports analogies that were used in our business meetings that I was most fond of. I learned how we should do a full court press on a project, or someone might call an audible to give us new direction. We were told not to drop the ball with an important task and praise by hearing it was a slam dunk when things went well. I had the opportunity to learn what each of these meant in both the sports world and how they applied in the business realm. But nobody had to tell me what a curveball was. When my son passed away, suddenly, at the young age of only 17, I certainly didn't see it coming. Life can throw curveballs our way. And when it does, we have a choice to make about how respond, we can get knocked down and stay down. Or we can choose to get back up and decide to finish the race strong. Well, my guest today is another mom who had that same choice to make when her son passed away at the age of 18. She's a voice coach by trade, the wife of an Air Force doctor, advocate, and mother of five children. After his passing, she created a blog to share her experiences, but also to connect and share stories of other parents that have had curveballs come their way. And the phrase she likes to use is life unexpected. She's an expert on raising medically complex children. She was recently featured in Newsweek, and on multiple podcasts. And she manages a rapidly expanding Facebook community for parents of children with disabilities. Her name is Julie Henderson. And it's my great privilege to have her as my guest on the show today. Welcome to Qualified Juli.

thank you so much. It's my pleasure to be here.

Wonderful. Thank you. So Juli, I mentioned a little about you in the opening. But could you just take a minute and tell us about your son, Robert, tell us about the disease he was diagnosed with but also about his character and his outlook on life?

That's a great question. I always like to start with who Robert was as a young boy without the diagnosis yet he was joyful. He loved music, he loved SpongeBob SquarePants. He loves Spider Man, all those fun things that he learned early carried all the way through his 18 years. But early in his life, he started having seizures. And we didn't really know what they were I had never seen a seizure. But he was diagnosed several years in to his life with something just called a, you know, seizure disorder. We didn't know really what that meant later on. His neurologist tested him for an additional genetic testing to see really where he was headed. And as his seizures progressed, and multiple seizures, all different kinds of all day, there needed to be some genetic testing. So we did that. And he then was diagnosed with a ch D two mitochondrial disease. So it's a CH D two disorder. That's pretty rare. So we kind of put those terms together. I don't often mention the CH D to disorder or disease because it's so rare. People really don't know how to categorize that there's so much great testing happening right now that there are a lot of rare diseases being discovered when we predominately say a mitochondrial disease which with it, then had regression for him and you know, lots of surgeries and which included a brain surgery and then trying to manage his care once he was diagnosed for those last 10 years of his life.

He sounds like a sweet boy. And I'm so sorry that he had to endure so much at such a young age. So you were given the diagnosis, but what happened next, what did your life look like back then? caring for a child with a disability?

Well in the beginning, because I'm not medical at all. I picked my husband's brain Chris's brain a lot to find out. Things that the doctors were saying to me and then to get his his input at As the dad, but also the doctor, I found that in the beginning, I did a lot of googling just on my own research. And I tell moms nowadays, don't do that to yourself, because you can deep dive and it can be really, you know, scary. And also can, can not help your stomach settle at all. So, in the beginning, I could handle it because it looks like it was maybe a seizure disorder that he would grow out of maybe just infantile seizures. As we got into it, I needed a lot of help. So he was back home with full nursing care, full therapies, therapists, we had, you know, his school brought back home eventually, so that he could have his education in the house, mainly for his own safety, because because he had every type of seizure that I that I can identify, it was not safe for him to be really out in the sun for a long time, because he didn't have ability to tolerate his heat and heat tolerance. So there are several things that made it really important that he was at home. And once we had nursing in the house, that was a great benefit to me, because I had someone that I could help share the medical care for Robert with, who also cared for him so much. So we had wonderful nurses, and teachers and therapists that came in and out of the house, in addition to his pediatric neurologist.

Good, I'm glad you were able to get the help you needed to come to your home. I'm sure that made Robert more comfortable, and it provided more safety for him. But what about you? How are you holding up? And what were some of the most challenging moments you had to go through back then?

You mentioned that our life has been a military life, or 26 years, Chris been in the Air Force. So you can imagine all of that time has had a job, you know, he had a job. And so we were very blessed in that way the Air Force treated Robert very well. But it was lonely. I'll say that because Chris got deployed several times, especially around 911. And that was hard. But again, I'll say, I because the older kids, we have five kids. So the older kids were able to help a lot. I have great girlfriends, that I could I say word vomit on them. They are they're strong enough to take it. And they knew also that some of the things I would say would just be an emotional, you know, just unloading on them. They weren't really the factual way I felt. So I have to say I felt very blessed. When I started looking back after several years, when Robert had passed, of how much time I was given with people helping me I know that's not always the case with other families. But I had 18 years but with time for different people to come into our lives and help. So I can't say it was easy. Some days, I was mad at God. Some days I was mad nurse some days, I was mad at anybody I could be mad at the mourning process, I really believe starts a lot earlier than we identify. Having those realistic conversations with ourselves and those around us that I feel I'm losing something, what is it, you're losing the ability of your child in different circumstances as he progresses. And so as Robert was progressing, I had to let myself feel those things, and really be honest about okay, I'm gonna mourn this ability now of his to ever be able to play on the playground with other kids, I have to mourn the idea that he's not going to walk like he used to, and he'll be in a wheelchair, I have to mourn the fact that he might not even get to 18. At that point, we had no idea. Now he, he probably should have lived to two and a half to three years. So my glasses pretty half full. When I when I really think about how other family families have more difficulty than I did. But I can't say as easy. And that's why we started the blog and the Facebook group. It's like, these are real conversations that we need to have. This is not easy, caregiving is very hard. And when you know your child has a genetic condition that is terminal. You need some really raw conversations with someone who's been through it, or someone who at least sit with you and listen. So that was the whole goal of the blog.

I can imagine with Chris being deployed that really made things tough on you. You're experiencing all these emotions without your husband there by your side. But I'm so glad that you did have a support system with your other children and your girlfriends. So let's talk about the good stuff. Can you share some of the joys and the beautiful moments of raising and caring for Robert?

Oh absolutely. So Roberts favorite thing to do was when he was younger to dance in the kitchen, so you know our second daughter is in the entertainment world. And so she's a dancer and a singer but Robert just thought it was the best thing ever for him to twirl in the kitchen. So all of us in our family have these great memories of rock are just growling. He just loved to twirl, he could rock a wheelchair music. And you know, we had to sometimes braces wheelchair because he would just rock it so hard he goes sliding across the room, you know. But those things that I think the thing that we cherish so much now is that Robert was happy. He had this terminal illness. And yet, if you got near him, you were always going to get a hug if you got near us gonna try to sloppy kiss you. You know, there were awkward moments with that too. But for the most part, our joy was that Robert, we knew he was well taken care of, we knew that we had given him the very best we possibly could. And the people that were caring for medically or through education or through therapists, they actually were really great people to have around him and they cherished him like we did. So that made it not easy, but it did make it manageable because we had people that cared for him, like like we did. So they get the sloppy kisses, they get the dancing, you know, thanking all of it. But those were joyous times. And just Robert being in our presence, and Robert being here at Christmas, Robert being with the family, even if he was on the couch with oxygen, he was in the room with us. So those are the joyful times that have been great. We've taken him on a walk to raise money one time for people in the community with disabilities in the wheelchair. And you know, we did little things, take them to a hotel, you know, Fourth of July, just a local hotel and said, Hey, we're gonna go over here and just spend the weekend so you can see some fireworks, you know, so we have great memories of him, actually, understanding that we were doing the best we could with him. And he always rewarded that with great smiles and great hugs.

I love that twirling, rockin a wheelchair, sloppy kisses, that sounds like a heart full of love. Thanks for sharing those special memories. So sadly, his life ended at the age of 18. And I know that left a great void in your heart. But you made a decision that you were going to use your experience to help other families that had children with disabilities. And you started the blog. You call it in our arms life unexpected. Tell us why you chose that name.

I have always thought that Robert was placed in our arms. He wasn't just an accident, he actually was given to us. And so he's always been in our arms. And I feel like because I was in the room and he was in my arms when he passed that was a very significant part of my life and my journey with him. Our oldest daughter actually came up with the life unexpected part because she said, Mom, this is it's it's something to relate to a lot of people, not just people who care for someone you know, with a disability that life is unexpected. And everybody's life is unexpected at some point in their journey. And so that's how the name came about. And then from there I am by trade during the day a voice teacher so I really wasn't a writer, I still say to people that I'm writing what I know. But there are some really great writers out there. I'm just happened to be one that's joined them. But you know, my heart is really just to share what we've gone through so that we're vulnerable enough so that people can see that they're not alone. And that's really important to me. So that name then in I for me, it's inclusive. It's like whoever you have that you've been placed in your arms there in your arms along this journey of life being very unexpected.

Well, I'm sure Robert was comforted living out his final moments and his Mama's arms. And your daughter really provided some great insight there with the subtitle because we will all have unexpected moments in our life. And I'm glad your blog can now serve as a resource to people who need that kind of support. So when we talked before you shared about the importance of inclusion in this community, why is it so important to educate others about inclusion?

I didn't really know what inclusion was all about when I was raising Robert, I knew he needed to be included. I knew that he was excluded sometimes. And I was very aware when it was blatant. But I didn't really wrap my head around the whole inclusion community until I started doing some advocacy with Morgan's Wonderland. So, Morgan's Wonderland is our wonderful theme park in San Antonio that has blessed my life. I sit on their board, their whole goal is to create across the globe, a new movement of inclusion which would include everyone, especially those with disabilities. And so the theme park was made by the Hartman family Gordon and Maggie Hartman for the purpose of those who have disabilities so they get in free. Everyone else comes after that pays a little A bit, but the theme park was built for. Not necessarily for me, um, I can go in and have the fun also with everybody else, but it's the theme park that was built with them in mind. And that's really important. So when I started to, you know, hang out with the team at Morgan's, I just thought, wow, this is such a new concept. Because everybody in the corporate world is talking about di and the inclusion part. But you know, who's talking out loud about hey, what about the individuals with disabilities? They have not been able or invited to have a seat at the table for all these conversations. That's one thing that Morgan's Wonderland does not do. They make sure there are people at the table with disabilities talking about what their needs are. So that's really important. And I think it's been an eye opener for me, I feel like I'm still learning on this journey. Even though I cared for Robert for 18 years. I know we can do better. And I know we can do a better community. And it starts really with me educating myself about where are the places that people aren't included? I know from personal experience with Robert, but what are the larger places larger spaces that they aren't even invited to the table. So that's really, really important to me, in some way, get in that conversation about what I experienced with Robert, but then to support those who are doing that really, really well. And so that's why I sit on the Morgan's board, because it's a place that I know, has now a bigger platform to talk about it. So I'm honored to be a part of it.

I think that's so good. Could you give us an example of a time with Robert, when you would have been better served if others had a better understanding of the necessity of inclusion?

Yes. And I love this question. It's a hard question because I give a very specific exam I'll give you I was in a store that I had been in a lot. And they knew me well, the employees there. And I had Robert in a small stroller at that point, he was not in a wheelchair yet. And he started to have an pretty massive seizure in the store. And I was in there to buy something and get back out like most moms do. It's like I got like 10 minutes, I have to go do this. And I have to come out. Well, I wasn't expecting to have a seizure in there. So an older lady came in next to me, she was also shopping there. And she looked at me and she said you should not have come in here. I said, Excuse me, and she said he should not be in here. You shouldn't have brought him. And I said I am in here shopping. And my son has a seizure disorder. And he's having a seizure. And she said, Well, it doesn't matter. You shouldn't have brought him in here. I was devastated. I took Robert out to the car. I would never advise anyone to do this. Because it's not. It's not exactly the position you want to take with someone in a store. But I said to her, I hope in your lifetime, you never have to deal with any kind of develop debilitating disease. And I hope you are never in any way disabled. Because this is what I have to go to every through every day with my son Robert, people accepting Him in a store. And he has every right to be here just like you and I walked out because I was so hurt. I cried the whole way home. Because it occurred to me in the first minute when I got back in the car that I didn't have the proper tools to say to her what I wanted to say because I was so hurt. It's like how could you look at my child and see him seizing and say he has no business here? Yeah, it was devastating. So the upside of that is I actually have another store that is very supportive people with disabilities, they move Rounders and racks of clothing for me when I had Robert to come in there with his wheelchair. And I told the store manager that story one time because I'd come in with Robert and I was just in tears because he was he was moving around Rounders and you know, clothing for me. So I could come in. And I told him it happened at the other store. And he said, You are welcome here anytime you bring Robert in here anytime you want. And we both just teared up, because it seems like a passing thing for most people until you have to deal with it. Have someone look you in the eye and say your child doesn't belong here because he has a disability, it was obvious big seizure. You don't know how devastating that is to a parent to have to walk through that. And actually, then let go of that and move on. You know, you just have to you have to handle it. But I'm not sure I handled it. Well, to be honest, because I just I mean, I was like I'm going to I'm going to respond to that right now. So I wouldn't advise you always respond because maybe it doesn't come out so nicely. But I figured at that point, the best I could do was wish her the best life with never having to go through anything that Robert was going through.

I am so sorry that happened to you and Robert. And I'm glad that you are now making strides to raise that awareness. So now that you've been an advocate for a while, can you also give us an example of a different approach to your former situation? Was there a different way to say what you wanted to say?

That's such a good way to ask that so carefully, Michelle, I love it. Whoa, well, I like to empower moms to say their truth. So I can say that sometimes the words don't come out in a pretty sentence all wrapped up in a bow. But I also really believe in the education of those around us, our family members, and our friends and our neighbors, what a great neighbor for her to reach out to her like that. It is the best thing we can do, I think, as parents, and I think this now because I, I've had some many years to reflect, to educate those around us. And if we don't do it, who's going to do it, if I don't say to, you know, when I'm in the grocery store, if I don't say to the person standing behind me, with my child who's you know, acting up or quote, unquote, or having a seizure, or just having a meltdown moment in the grocery line, hey, my son or daughter has, you know, an issue with blah, blah, blah, I know, this is going to take more time than you think. But we be patient with me, because, you know, he has special needs, however they want to say it. But it's can be as simple as that, like someone's in the grocery store with you. And they're looking at your child wondering why you know, you don't spank them, or why you can't control your child, they're just trying to, you know, get their one item and get out. It helps to do something like that, because most people respond with oh, I didn't know, can I help you? You know, and so I think it's part of our job as the parents to educate those around us, because we have the experience. And I also think if, if we have the fortitude and the minute to do it, it's it's the most important thing, because you're still a little bit wrapped up in and like, let me tell you in a nice way, so I won't have to come back into the store and tell you another way. You know, so if you can say it right, then it just eliminates a lot of the stress later also of why didn't I say something? And then you know, you have that whole thing of shame, I shouldn't have, you know, you know, blah, blah, blah. So I think there is that there is a skilled way to do it, I just don't think we always have the ability to do that. Because it's very emotional. Yes. And, and you know, so it's, it's, you've talked to enough people have gone through loss, that it's just I give people a lot of grace and say, if you can do it in that moment, great status, as kindly as you can, with a lot of grace, because you also don't know what that person is going through in the line behind you, you know, but as much grace as you can, but speak your truth, you know, you should be empowered to defend and advocate for your family member without necessarily having to judge whether the person receives it or not. Yeah,

I agree with you. It feels like there's a time and a place to educate people about the issues we're facing. I went through some tough times during my own grief with wanting to help people understand. And then there were times it was easier just walk away. It's a delicate balancing act for sure.

Yes, it is. And I and I can't say that one formula works every time because it doesn't. And it just depends on your day, what your child has been through, you know, we were in plenty of ICUs, where Robert was not in a good mindset, he did not want to be there. And he was going to have to have an EEG and have a bunch of, you know, things put on his head and he wasn't in a good mood, and I get whacked in the face. And you know, or one of our families members would or nurse would and you have to navigate that sometimes in front of people. So I think there's a lot of grace there. I just don't think it's, let me say this, in contrast to what I just said, I don't think it's always the mom or the dads or the family members responsibility to educate the whole, you know, community. People are grown adults, they can educate themselves, you know, it's not my job to educate you about how you should act. When you're around someone with a child who has a disability, you can look that up yourself. You can, you can research, I will do the best I can to educate you and point you in the right direction. But then it's your job to educate yourself about inclusion about people with disabilities, about how to support your neighbor. So those are two contrasting things. I think they're in the same vein that if the mom can speak up, let her speak her truth. If if she doesn't want to educate that day, because it's not a good day for her. Let her have the grace not to do it.

Yeah. Well said. All right. Let's talk about your husband, Chris for a minute. I know he's also a contributor to the blog and a talented writer. I mentioned that he's a former Air Force doctor, and he's currently a critical care physician at a hospital in San Antonio, Texas. Upon losing, Robert, how did Chris's grief differ from yours? Especially given his role as a doctor?

Such a good question. Very different. We grieve very differently and at different times. And I think this is one of the things that couples should really talk about because I don't deal with death every day like Chris does with his patients in the ice. To you, I think I might have been a little bit more vocal about, you know what I was seeing. And he was more he internalized what he felt. And honestly, he always felt Robert was going to grow out of it. Until we got to a place, we realize he wasn't going to grow out of it. And I had to make a phone call to him from the hospital. And Robert had been been told I'd been told that Robert seizures had, even though he'd done a brain surgery, they were starting mid brain and going to both hemispheres. And so that was not something they could fix, you know. And so I had to call him and tell him that, and that was devastating for both of us, because in that moment, medically, he realized we cannot fix this. And this is not going to be something he can grow out of. But I I think only because maybe also, I was with Robert all the time, Chris was at the hospital, you know, and he seemed part of it, he was there's no way on the green earth that he didn't understand what was going on. It's just that, you know, different mindsets. So. And Chris was very, very close to Robert, he spent most of his Saturdays in Roberts room when he could, you know, with the nurse. So mine was more maybe on the advocacy side, because I was always fighting for the next thing. Well, let's fight for this. Let's fight for this. Let's get this and you know, we're going to do everything we can. We're going to fight, fight fight. And we both did that for a while in our morning for Robert, it was growing up because there was only thing we need to do. We just like, Okay, we fight for every one of the other kids. So we're gonna fight for Robert. And so it was hard. And the hardest part I think for Chris was when he was deployed, you know, for, you know, eight to nine months, three times, and he was away. And Robert was really having a hard time and declining in and out of the hospital. And I had to navigate that by myself scary for me, but so detached for Chris. And so we worked through it because I tried, we tried to communicate as best we can. But there were times I'd have to, you know, really say I can't tell you what's going on. Because it's really hard. And I don't want you to have that burden while you're in another foreign country trying to help your ICU patients during the war, you know. So I had great girlfriends, though I had Yeah, so but we mourn differently. And at different times after Robert passed, I think I mourned in a way different way than I'd ever thought was possible. I was angry for about a year. And Chris was just he's got a heart of just a heart of a grateful heart. And so he was very grateful to have Robert for 18 years. And I was too I just wanted him for another, you know, 40 years. So I had to take some time and really be honest with him that I just Emad, you know, it might take me a year, and it did take me a year to even talk about my faith and about what I really believed. And I know the stages for mourning. And I know I went through all of them. But the anger part was really real. So my my real depth of mourning started when he passed because then I'm dealing with the reality of it. Yeah. Until then I am advocating for him until his last breath in my arms. So it's just different. And also because Chris is a physician, he seems so much death that I had never seen. And so it was so final, you know, for me.

Yeah, I get that. So hard for both of you. But the processing of emotions is so different and complex. Back to the blog, I read an entry that you call believe in the blog, you say we, we don't often get to prepare for the sudden things in life. We're far too often thrown unwillingly into the fire. Where will your belief trust and hope stand in the real world in your life? When things are upside down? When the lights are turned off? The phone doesn't ring when the pain is unbearable, when the casket is closed, and you preface that by telling us that these are the questions that really birth growth. What do you mean by that?

Well, I'll tell you personally, I don't trust a faith that has not been tested. So I could say that flippantly before I had Robert, you know, it's like you're gonna get tested, it's gonna cost you something. Well, the cost here was our son. And so during that period, I told you that I was an angry for a year I specifically was angry at God. I'll have to tell you that because that's the honest truth. I could not reconcile to me in my own heart that I served a loving God, who also allowed Robert to be born from his first set. Girl with a seizure disorder. Yeah. So I had to reconcile that this is the God I love and serve. So that was the time where I really searched and and out of that came that blog post because I was in another state with a friend who had just lost her special needs sister. And those questions are very real to me because I had to really deep dive and say, Okay, these are things I thought I knew. And these are the things I really know that, that people have disease, that not everything gets healed. And not everything was curable. Yeah. But what do I believe about who I serve? So in my faith as a Christian, do I believe that God is big enough to handle someone like Robert, do I also believe that I could be given a child such as Robert, the joy of my life? Who was born with a terminal illness? Can I believe that that child was also put in my arms just like our other four children? And I had to come to a place like, Yeah, I do believe that. I do believe that. That is the God I serve, I don't understand it. And I think my little brain as a human probably will never understand it. But I do believe that God has been faithful to me and faithful to our family. I believe that when I say a faith that's not tested, I, I believe everybody that is called to hard ministry are called to really you know, service, say, in the hospital or service at a school with a special needs, or a special education class, there has to be something in you that you're compassionate enough about the people you work with. And it generally is one I found, because you've been through something. So I trust people who have been through something because I know I'm gonna be wrong, honest with them, and they're gonna be okay with it. And that's, again, the point of the blog is like, I couldn't find a book, I couldn't find a podcast, I couldn't find anyone who had a rare disease child like, Robert. I mean, Robert was unique. I know that and I know, there weren't many in the world with his condition. So I couldn't have those hard conversations with, you know, people that just hadn't walked where I'd walked. And I'm not wanting him to walk there. I don't want him to have to walk there. But I needed something. I needed that. And so that's why we the blog is so raw, I mean, all of our lives are out there. And I think sometimes that too raw is you know, to oversharing. And I'd rather overshare and tell you exactly the good and the bad of it, and how I walked in my family, with my kids, with my girlfriends with my God. And have you draw something from that, that says, you know, I understand where you've been, and if you ever need to call me call me, you know, or if you ever need to come over my house or you need to, you know, write me an email, write me an email if you need to text me. I'm gonna listen because I understand that life is hard. And I and I, and I think that's I look at it now honestly, Michelle was a gift that I was counted. Worthy. Roberts, mom, right. Don't you feel that way? I wouldn't have wanted anyone else to raise Robert except for me. Because I adored him and our family adored him, Chris adored him and other kids adored him. And someone said to me one time wow, God allowed someone a specialist Robertson place in your family. Isn't that cool? I was like, yeah, it's very cool. I got the privilege of raising this unique human for 18 years. Yes, that was really special.

God knows what he's doing.

Does, yes. And he can take me say, Michelle, also he can take our anger. And he can take our frustration. It doesn't knock him off the throne. You know, he's there in love and compassion and waits tenderly, he waited for a year. And until I could get my back to him.

And, you know, I have to tell you, I appreciate the raw language in your blog, because I'm one of those people. I've been through adversity in my life with the loss of my son. And we do have a need to talk on this deeper level because of what we've been through, and actually found it difficult in those early days to engage and, you know, surface dialogue, all of that small talk felt so meaningless in light of our grief. So I appreciated reading your blog, and I felt like I was understood by you.

And may I also say Michelle, one advice to any mom or dad is going through it. If you feel that what you're going through with your child is too much either the medical condition or sadly, the passing and you're in a conversation or you're in a room where those little things everyday things that people are talking about are just irritating you because it's like you have no concern for that anymore. Remove yourself from the room. I've done a couple of times. I just removed myself from the small group and went to the bathroom and just went off. I don't care what color her curtains are, you know, remove yourself until you're able to do Do life again?

Yeah, yeah, fake it till you make it

that knows a whole nother meaning for us, doesn't it?

Well, okay, on that note, I want to talk about a blog entry that Chris wrote, and you may or may not have all the insights of what went into it. But he wrote one and titled please don't play that. And he talked about how he wrestled with his own relationship with God, and the pain that God allowed to happen to you, his wife. And he also closes the post with one of my favorite quotes from AW Tozer. And that quote is it's doubtful whether God can bless a man greatly until he has hurt him deeply. Can you talk about that song, the song that you didn't want to hear that time in your life? And then the significance of that Tozer quote,

yes, so I would say that was after Robert passed, and still in my morning, deeply, but also just angry. Just, you know, mind you, I am a worship leader. And I've done that for years. And, and predominantly, you're teaching now, but I, I try to share with my students even who are worship leaders, you're not always going to want to be on the stage singing the songs that you're required to sing, because you're going through something in your life, life unexpected. But what happened was, there's a song Good, good father, and it talks about how good God is just good, good, good, good, good, the whole thing. And every time honestly, Michelle, I went back into the church service. After Robert has passed, our worship leader was leading that song, and I told his wife, listen, he cannot do that anymore. Because every time I come to church, that is the song we're singing. I said, I can't do it. And we just laughed, because it was, it was like, I don't think it's calculated, but it is happening. And so I knew that was a place I had not resolved yet. And that was something for me to really get my head and my heart and my spirit around that I had not resolved that and that's why I could not be in the room when he's saying that. So when Chris would play it in the car, I had the same reaction. You can't play that. I just can't. And Chris was in a different part. We talked about different parts of grieving. He had already gotten past that he got past it, quote, unquote, because he is also a worshiper, and he just loves that song. And he he needed to play that song. Well, I couldn't have it. I was just like, No, we need to change it. And the reality of that was, it did help help our conversation because he knew how deeply I was, I was hurting. And for him, it was a different side of, well, I don't feel that way. And and I don't feel that way. This song brings me you know, solace. This song means something to me, I love it. So much total different reaction to me was like, it's like, oh, my, every part of my hair would stand up, because I never know that would change it. So when he wrote that, and we talked about it, but I've never seen him, put it in writing. And he is a great writer. But when he put that quote in there from Tozer also, it was like, yeah, that's somewhat something we talked about early in our marriage, about the cost of ministry or the the the testing of your faith. And so that quote, is very much his life. And we talked about it, I give so much grace to people now, when they're angry with God or angry at anything, if they've gone through some loss, because it is. It's not who they really are. It's just that we have to work through those emotions and those thoughts and process in that space. What is happening? Like, what has just happened here that I just buried my child at 18, you know, how is that a reality? And so when Chris wrote that, it, it really meant something to both of us, because he was expressing how he felt when I sent that to him, which I had never considered. It was just like, well, this is what I need. And then he expressed what he needed. And I thought, What a cool way to actually say that.

Yeah, it was so good. I loved reading about these emotions from a male perspective. So I'm glad he also contributes to the blog. Okay, so Juli, given everything that you've experienced in raising and caring for Robert, what are those big life lessons you learned, that you can share with someone listening? Who might be in a similar situation and needs help right now?

One thing that we've talked about already today is that you're not alone. I thought I was alone. I didn't know how to ask for help. Because we'd always you know, the military ways pull up your bootstraps, let's go and you know, you know, you're gonna move you're gonna do this, you're gonna you know, and you just handle it. I couldn't handle this one. And so I've learned that I'm not alone. I had people that rallied. I learned that when I kick up against a brick wall, that that wall might not move as much as I think I am, you know, suit For a woman and I can I can, I can do it, I had to learn to tell myself that's not moving, he is not going to grow out of this. It's a brick wall, you need to turn to the left or the right, but you're not going forward. And I think that is a deep place of growth for many people that you can't fix that. That was really one cool thing. I do. Love the idea that if you have people around you, who understand you, as a person, like love you, regardless of you know, what you look like and what you do, those people become incredible supporters just as far as sending a text. Hey, let me check on you today, before and after Robert pass. So I've kept an incredible group of women around me that I just adore. I mean, there's no way I could have gotten through any of this. And I think it's, it's something that we while at least, I never had girlfriends like that. And so for me, I came to that late, I'm kind of a late bloomer. That's really important. The other thing I mentioned in one of the blogs is that there is a need within the disability community for moms, especially to be invited to things and this just happened, you know, a couple of months ago that, you know, a mom wanted to be invited to something continually, even though she could not get to most of the places, that the idea that you're alone, and you don't get invited anymore, because you're caring for a child with a disability is very harmful, it's hurtful. You're most people don't have the ability to say that out loud, like, please keep inviting me. I've learned that that's really important now that Roberts past that, I'm not caring for him any longer. But I need to still reach out to the moms that I know who are caring for, for their children, and invite them, Hey, let's go to breakfast, hey, you got one hour, let's let's go get some coffee, I'm gonna treat you to coffee, things like that, that I don't think I recognize necessarily were happening in my own life. Prior to Robert passing, I realize it's very important now that I keep inviting, and I keep in contact. So those are a couple of things I've learned. The other thing I've learned is that this is this is different to say that I'm probably not as smart as I thought I was. And I say that in a way that I thought if I did all the research, and did all the Googling and had all the best doctors and took Robert here and took Robert there that, you know, I was on top of it. And there again, there's that brick wall of Yeah, that's a brick wall. You're not gonna walk through it, Julie. And so I learned to accept that I know the things I know. And the rest of the things I'm just gonna leave in God's hands. Yeah. And so that was really important to me.

Yeah, you can't control everything. Well, thank you for those great lessons. And I think they can benefit so many of us whatever trials we're going through, we're not alone. Some things are out of our control, get community support, and learn to accept the things we can't change. Great. Okay. Well, I know in addition to the blog and social media, you mentioned sitting on the board for Morgan's Wonderland. But there's a big endeavor that you're currently embarking on that involves the NFL alumni, as some important sponsors. Can you just summarize that for us?

Yes, girlfriend and I call her she called me and said you want to do a big golf charity golf tournament and raise some money for nonprofit? I said, Absolutely not. No. I said yes, I do. I don't play golf. But I would love to be a part. And so we together chose Morgan's Wonderland, which is really the umbrella. Charity is Morgan's inclusion initiative to donate the money to So fast forward several months, and we have NFL of the NFL Alumni Association as one of our partners. So all the foursomes will have an NFL former player as their team captain will be at TPC San Antonio. And it's the big deal because the Texas open will just happen there. And then Amazon heard about us. And we have Amazon as our top sponsor, which is unbelievable. Yeah, I say to everybody who girlfriend's having a conversation on a phone has turned into Amazon as our sponsor. So we're so excited. People are even today, purchasing teams. And so the sponsorship is pretty straightforward. And people can go to the blog and go there to look at it. I think that's probably the most direct way if you go to the blog, I did a video this week on it. And so it's all in that video. So in our own stock blog, and for me, the biggest part of it for our family is that the end of the tournament 80% of the net proceeds will go to the Morgans inclusion initiative, the 20% will go to the NFL as charity called caring for kids. And the two checks will be presented in our son Roberts name at the end of the event. And so for us we're the legacy family for this event and we couldn't be more honored to have named Be a part of it. It's part of what we're going to do as a community, we're going to make some things happen. And we can do that as a community.

Yeah, well, I'm going to link your blog in the show notes so that people can go there and learn more about it, and your Facebook and all of that. But was there anything else that I didn't ask you that you wanted to say?

For me, as I'm talking to other moms, I want them to know, first of all, it's not their fault. Because we go there sometimes, you know, what did you do to cause this childhood? You know, and, and so I like to say that to them, especially in a genetic condition, it's not your fault. And to go along with, you're not alone. That there, there are people that are willing to help, I just think having the ability to ask them is something that I found very hard to do, I did learn to do it, because I didn't have a choice, I needed help. But to see if there's like one person around you that you feel like you can be really honest with reach out to that person and see how that goes. Just try it. Because I think once we do it once we become more open to having people help us. And I think that it just starts with one and I think it's not always pretty because people would come into my house, you know, clothes on the sofa, or, you know, I'm half, you know, I'm not put together or hairs everywhere, you know, because that minute bad morning. So sometimes we're afraid, or at least I was afraid to have people see me like that. And then see me on the stage for leading worship, and then at home, how is this woman? I think if you just take down a little bit of the mask, and and if you need help ask for it caregiving for caregivers, is really hard. And it can be physical, it can be emotional, it can be spiritual, it can be all the things. You need to make sure that you as parents, take care of yourself and ask for help. It's really, really important. And some parents choose not to care for their child in their home because it is too difficult. And those are decisions that are made as a family and you know, each family gets to make those decisions. But for the most part, everybody needs help no matter who's caring for your child.

That's good. I'm sure that we'll sit with somebody and help them very much. So thanks for sharing that. All right, Juli. Well, at this point, I just want to say thank you so much for agreeing to come on the podcast, it was great to have you.

I just loved getting to know you a little bit. Michelle, you're just amazing. And I appreciate you allowing me to come share and for us to share our lives and our similar circumstance and just being vulnerable with each other and talking. It's it's something we need to do more of

Well it was my pleasure getting to know you as well, Juli, and I agree we need more of these conversations, because, as you said, it's through these hard times that we grow.

Yeah, yeah, growth. We got growth happening,

Amen! So for those of you listening, I hope you enjoyed this conversation with Juli, who truly turned her loss into a blessing and comfort for so many others. Remember that we have a choice to make when our curveballs come, we can get knocked down or finished the race strong. Juli is running the race and picking up the injured and fallen runners along her course. She serves as an incredible inspiration to me, and I hope to you as well. So please remember that you too can get back up even after life's hardest blows. And one day you too will be able to help someone else with the lessons you learned in your loss. Thanks for listening