Life Begins in the Pit - Discovering the sweetness of love through suffering

Michelle:  Well, Hey everybody. And welcome back to qualified. I'm Michelle Heaton. On this episode, I'll talk with another extraordinary guest who will share his story of overcoming adversity and loss with the greatest of all human qualities. Love. Today, we'll meet Kevin, the married father of three children ages 25, 22 and 18.

 We'll discuss the condition of his middle child. Danielle who at a very early age was diagnosed with a type of illness that would require her full-time care and support for the rest of her life. Welcome to the podcast, Kevin, and thank you so much for agreeing to be here. 

 
Kevin:  Thank you, Michelle. And this is a great opportunity. I really appreciate it. 

 Michelle:  Well, Kevin, you have three incredible children and a loving and supportive wife. Your background is in criminal justice, and in fact, you've worked for many years providing pre-trial release investigation here at a local jail system. And your wife, Laura provides physical therapy services to medical and surgical patients at one of our local hospitals.

 So, the two of you were living out the careers that you studied for in college, and also following your passion to help other people. So, when Danielle was diagnosed, you immediately knew that things would radically change in your family. Can you take us back to that time and tell us about Danielle's diagnosis and the capabilities she would have as well as the limitations that would be part of her life?

Kevin:  Yeah, absolutely. Danielle is diagnosed with lissencephaly type one sub-cortical band heterotopia. It's a smooth brain syndrome and it affects in one estimate, 11 in 1 million children, so it is extremely rare. We didn't learn about her diagnosis until an MRI when she was 13, but beginning at four months old, she presented after very typical seeming development to that point with a very severe seizure disorder.

 And the seizures were micro seizures that lasted 24 hours a day and clusters of hundreds at a time. Danielle is 22 now, but has a cognitive age of one to two years old, she is fully ambulatory and has the sweetest basic nature. She laughs a lot loves Disney princesses, children's books, singing songs, going for walks around the block. And we are so grateful for all of these things, but as you stated, she requires 100% assistance with every aspect of her life. The most concerning part of her life is her uncontrolled, very severe seizures, and she will have major seizures frequently in clusters of two or three. Several times a month with each seizure or cluster requiring a full 10 days or so to recover from. And then she'll be hit again with another cluster of seizures.  A regular part of her seizure recovery, and now a regular part of her life is a phase that includes extremely violent behavior screaming at the top of her lungs, ripping hair out of her head constantly. And especially within the past year, actually going after me and others, trying to grab, hit, kick pounding on doors, damaging walls and furniture, et cetera.

 But all this to say, Michelle, in many ways it feels like we've been in crisis mode for most of her life.  Our planning back then and what we knew she could do or not do, has always been in flux for the last 22 years. 

Michelle:  You have two other children, and you described the environment in your home. How did that impact the other two in the house?

Kevin:  Well, having our three kids at that point, then, as you mentioned, Laura was working full-time as a physical therapist. And I was in my job. Danielle's condition was breaking us as a family. The stress was affecting our marriage and the stability that we needed to raise children financially. We were stretched super, super thin. It felt like we were sinking and weren't going to make it out in one piece. So, we determined at that point to have Laura who's career offered much more in terms of opportunity and even financially at that point to have her work full-time while I stayed at home with the kids.  And I brought to the arrangement, the ability to plan meals and cook and as guys go was fairly sensitive and empathic, attuned to the children's personalities and emotional needs.

Michelle:  So, it was a good fit for you to be at home?

Kevin:  Yeah, the original plan was for me to get a master's degree and work into another career yet, that was just one other grand idea that ended up being challenged by the unforeseen reality of being involved in caring for Danielle. So the key for Laura and I was to help create a home environment that was as normal as possible for the other two children, even as we dedicated significantly more time and energy to try and to help Danielle, what we found was that we as a family really did in our own ways, rally around Danielle and her life has really shaped so much the stories and emotional lives of our other two children now, 25 and 18.  It is generally positive, but there are, are, and have been some terrifying moments along the way. Really quite traumatic because the seizures themselves are awful to witness. And there are tense moments when she stops breathing, which they would hear and see, we couldn't protect them from that.

 Not only did she occasionally aggress on particularly her younger sibling, but she would scream so loud that our entire corner of the neighborhood could hear. We also had the almost yearly Christmas tree incident where she would rip down our newly decorated tree in an outburst. We knew every year that the Christmas tree was going to come down at least once. And we lived with that.

  Perhaps one of the biggest adjustments. Has been the inability to do things as a family, as a couple oftentimes. So, Laura and I have had to divide and conquer over the years. Not something that we an otherwise very, very close couple would have wanted to happen. Would have foreseen before we started having children. For example, Laura took our son to New Zealand about four years ago, without me to visit a very special family there who have a daughter with a similar diagnosis, with many similar struggles to Danielle. One of the two of us has missed many, many get-togethers with friends and family. Over the past decades.  We do have help, you know, with many services, particularly respite care so that we can go out together, but Daniel's condition has been so serious at times. It really has often been beyond anyone else's ability to manage safely. 

Michelle:  So, how do you balance meeting the needs of Danielle and then taking care of yourself?

Kevin:  It's kind of interesting that I was facilitating stress management courses for the county where I worked. And so, I would actually have to implement the very principles that I was instructing these participants to do. And we would always talk, you know, about the four dimensions of wellbeing, how important it is to take care of yourself, physically, relationally, emotionally, and spiritually. And you can factor yourself out in the whole process to where you're not taking care of yourself.

 Laura and I tried very hard to support each other in our need to, for example, get exercise and I am very much into, as you know, eating a very, extremely healthy, mostly plant-based diet. Not just because it's what I prefer, but because it makes me feel better and it keeps me optimally primed to, to help take care of Danielle and her life.

 One of the things that I do a lot is to meditate and that has really helped me to capture time each day in which I just sit, practicing, staying in the moment, staying in the now. And it also has helped me to be able to analyze what's going on within Danielle. I realize that she is the one who is actually suffering the most of any of us. And most of the time when she's dishing out the worst of her behavior, more often than not it's because she's feeling horrible than ever at that particular day.  But every single day presents new challenges, so I have to have resources and in terms of thinking to work through these issues and maintain sort of a, a feeling of not necessarily happiness, but at least hope, a little bit of hope each day. You know, that's very important for me. 

Michelle:  Kevin during this 22-year journey with Danielle and your family. I know that you learned some very valuable lessons. You experienced a variety of losses over the years related to your daughter's condition, but you told me that what you gained far, outweighed them all.  So, will you please share with us some of those profound lessons you learned that might help someone listening today who needs to hear it?

Kevin:  Um, yes, I would. It is so interesting to me, Michelle, that Danielle was hospitalized at four months. Right there in the pediatric hospital room. And then every single one of the six or seven rooms there, I could hear a crying either of a parent or a child.  I could see loved ones standing in the halls, looking tired and spent and fearing the worst. What Danielle was going through, what we were going through as parents. What all of these parents on this floor were going through was the heart of life. This is where the struggles begins. And at that moment, it finally came to me after 33 years of pushing off the truth that what we were experiencing with Danielle at that moment was the reality of life.  And we were part of it. So, Laura and I were not singled out for special suffering, even though I had been through quite a bit of trauma myself, I had never really allowed the pain that I was going through to really impact me.

When I was 14 years old, my mother who struggled with bipolar disorder and had survived severe sexual trauma as a young girl, attempted to commit suicide for her first time. And it was the first of many attempts and I'll never forget that dark hole that I felt that I was in at that point in the midst of that time, I'm feeling the most alone I'd ever felt. I heard a Beatles song, Dear Prudence. And it's a song in which a very vulnerable John Lennon sings “Won't you come out and play - greet the brand-new day. The sun is up, the sky is blue, it's beautiful, and so are you.” And I remember knowing at that moment, hearing those words that I was going to overcome my pain and not just live, but thrive. I cannot tell you how significant that moment was for my young life. But the amazing thing is I didn't realize how significant that moment was until after Danielle's situation became more apparent.

 That was 19 years later in the hospital. And having lived through that experience. It took me back to, again, this theme where in the midst of suffering life is going to have its way, one way or another. It's going to have its way.

Michelle:  You have to choose how you're going to react to it.

Kevin:  I think that's the thing that you have with a situation like Danielle.  And a lot of these situations is there's an ideal that you have in your mind of how life is supposed to go and how things are supposed to happen. But life has totally other plans. I think that's another beetle song, but if we're not willing to adapt and change. As we grow. And as we learn the true nature of life, then it becomes much more difficult.

 In fact, I could make the situation a lot harder by asking why me, why me, why me and really when the correct answer is why not me? I mean, if you look around and see what's going on in our world, the current more correct answer, the correct response to why me is why not me? You know, and nobody is immune to loss. And that is the nature of life. So, five years after my mother's first attempt to commit suicide, she succeeded in taking her own life when I was 19 years old. But it's just amazing because three days prior to that I had started dating Laura. And this wasn't just any girl for me. 

 This was a girl who emotionally and in every single way was perfect for helping me to deal with what I was going through. So again, just like the story with Dear Prudence and the first time that my mom tried to commit suicide, and then at 19, she actually succeeded and I. And started dating my beautiful wife who was perfect for that situation.

 It wouldn't be until I was 33 years old, dealing with this utter tragedy to look back into my life and see where life had glimpsed through the suffering. And I began to see that life ultimately, no matter how challenging or difficult it is that that life springs anew. And one of the things that we would talk about in stress management, I would always start with the story of how, when I was 13 years old, I actually living in Seattle at the time, felt Mount St. Helens erupt.   And when Mount St. Helens erupted the entire territory area around Mount St. Helens was absolutely decimated and devastated and lives were lost. And I'll never forget, a year later, the Seattle times publishing a photo of this moonscape area around Mount St. Helens. And these green saplings were growing up through the cracks in this devastated land and in stress management I always stressed the fact that in the most challenging and difficult times, it's so easy to lose hope that anything good could come out of this, but just this fundamental idea that when all hope is lost to not give up. And it's easy to say that, but to know that, to look for and find the smallest elements of love that you can in your life, in the midst of the pain.

  One of the things that I do each day, is Pray. Kind of following the Lord's prayer. And the first thing that I do is to try to come up with things that I'm grateful for.  And again, for people who are in the midst of it, I, you know, over the past 17 years kind of being the primary caretaker of Danielle there have been days and weeks where if someone had said this stuff to me, it would have fallen on deaf ears, because I really had lost hope in those times. And those were the days, honestly, where the best thing that I could do is to live one moment at a time.  I became such an immense believer in the power of love that the Christianity that I had grown up with began to seem extremely small, but it really felt like I was having almost a near-death encounter with the awesomeness and the supremacy of, of God's love, and it completely blew away everything that I had thought in terms of what love was. Shook my whole foundations of my life. 

Michelle:  I think I felt a similar experience when Sean died because all those years, I thought I knew what my relationship with God was. But it took me to such a new level because you find yourself in a place where you can't go on, you can't take the next step forward if you don't have that faith to lean on that hope. And so, it becomes part of who you are at such a deeper level. That the way you said it was almost like it was small before.

Kevin:  Yeah. And you know, when you have a situation, like what you went through with Sean and what we were dealing with Danielle, when you're dealing with a child like that, I mean, the bottom falls out.  It completely changes everything. So, it seemed like the faith that I had grown up with it, and I had adapted for me, it was so much smaller than what love is.

Michelle:  Kevin, tell us about that other key moment, where once again, a Beatles song played an important role in your life.

Kevin:  Yeah. So, it was kind of fascinating because what I found more recently was particularly through the COVID experience, I found myself like a lot of us, just more, more lonely than ever, and wanting discussion and wanting to have a discussion about God and about love and about this life. And, I'm looking around for a virtual zoom group of guys to just talk about God with, you know, I look on the internet and there's a Bible study called “All you need is love” in which the Beatles song was being discussed along with the New Testament book of first John.

 So, it was like, okay, well, so I guess I know what I'm supposed to do now. And what was really fascinating was the church that was doing this and the guy that was, I had no idea, but the actual group was organized by a friend from college that I hadn't talked to in many, many years. And that was even more interesting.

 And this is a church body that I've become part of in the last year or so, and have really appreciated their approach to love. Like they are very much about love and acceptance about following Christ, but just a no holds barred, loving people for exactly who they are. Right where they're at. So again, these were other kinds of things that in the past, I might've thought about them as being just like, wow, that's an interesting coincidence, but. You know, just sort of the nucleus is still Danielle's infancy and her suffering and blossoming out from that is this understanding that life is having its way in my life, through our suffering.

 And there's a Bible verse, Psalm 40, that starts with “I waited and waited and waited for the Lord.  At last, he looked finally, he listened.  He lifted me out of the ditch, pulled me from the mud, stood me up on a solid rock to make sure I wouldn't slip to me.”  That really means for me that the beginning of really experiencing life and love actually begins in the pit. A lot of times it begins in the depth of our lives and that without those depths, without the actual deep depths of despair and hopelessness in our lives, the sweetness of God's mercy and love is not as clear. And that that's where we actually experience His love more fully is from those depths. And I it's, it's funny because I had lived through my mother's bipolar disorder and a very dysfunctional upbringing. It's like, why did it impact me? Growing up because I had created an edifice around me of thinking and identity. I had created a whole superstructure around my life to keep me from going

Michelle:  into the pit

Kevin:  into the pit that's right. 

Michelle:  So, I, I recall telling a therapist one time. I didn't want to go into the pit. I didn't want to talk about the thing because it was too painful.  And she told me “The only way out is through.” 

Kevin:  I love that. Yeah. 

Michelle:  I know you have a very analytical mind and you've had this version of spirituality that you described here that worked for you, and that was even bigger than the models that you had seen in the past, which I totally get. And so, in the end, you end up having this Beatles moment and then you came home one day, kind of struggling with some of the things you even heard in the group and here goes that analytical mind again, trying to tear it apart. And then something happened when you came in the door, what happened? 

Kevin:  Yeah, absolutely. Yeah, it was, it was so fascinating.

I started to get deeper into it and I'm like, I don't think I can do the theology, I don't think I can do the dogma. I don't think I can do this. And I walk into the house and Danielle. Just randomly sings to me. “Jesus loves me this I know, for the bible tells me so” and it was this centering, like. What are you doing? Just get back to the basic issue here, which is that you are loved, you are loved and live as if you are loved.

 And it was just fascinating to me because Henry Nouwen, I just read something by him that posthumously, he wrote about how children and people with disabilities live. They cut to the chase in terms of their approach to life and that we have so much to learn from people with disabilities and like Danielle, again, she's functioning at a one- to two-year-old cognitive level. And at that moment, again, I didn't see as an accident that she. Gave me the answer right then, and there is let go of all of your pretentiousness and your, like you said, your analytical mind and just love. Love God, love Jesus. Let him more importantly, I think for me is two things. Let him love you. Let him take care of you where you're at, and if you have the ability to care for others and just really care for people in love. Do it go out and do it and do what you can to help ease, suffering and pain. 

Michelle:  Well, thank you so much, Kevin, it's been an honor to interview you on this topic because you've inspired me as well about what's really important in life. So, for those of you listening, it is our hope that you can find it in your heart to give love away like never before.  Love is the greatest of all human qualities and it really is - All we need.  The Beatles got that right!

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 Thanks for listening.