Author Archives: Stephen Leonard

Whatever the Future Holds

“Did you ever think you’d be carrying your 18 year old on your back?” Lisa asked me this weekend. I didn’t. With David 18 going on 19 this summer we have been facing many experiences and questions I never really considered. We filed a conservatorship for David this year empowering us to make legal decisions on his behalf. In the process we were asked our transition plan for his future care.

Now that Matthias is finishing his junior year of high school, it brings to life how our little boys are no longer little. In Matthias’s case it’s more obvious, with driving lessons and discussions about college. With David, still physically little, still requiring so much care, still facing severe medical risks from time to time, it’s easy to think of him as our little boy. He still likes cuddles and silly childlike play. But the truth is, the day is coming when we will have to rethink his adult care.

Our approach to raising David has always been to help him realize his potential, to let him show us who he is and what he can do, and to do our best not to limit him. We have traveled the world with him, hiked with him, gone on adventures big and small. We encourage his love for music he shares with me. We encourage his love of exploration and getting out. We laugh with him and his amazing sense of humor.

To be honest, I don’t know what the future holds. I’m still a dad trying to grasp the questions rather than having all the answers. In the meantime, no I never thought I’d be hiking with my 18 year old on my back, but whatever the future holds I want my son to have the richest fullest life he can have. Whatever I can do to that end, I will.

You Can’t Make Old Friends

The men in this photo have been my closest friends for over 30 years. I don’t have brothers but it’s these men, and the one painfully missing, with whom I have had the closest thing I’ll ever know to brotherhood.

Losing our dear brother Leo a year ago, the pandemic, our trials with David’s health and more have taught me close relationships are one of the things that matter most in life. True, full and rich life includes real friendships and open family connection.

Like the song says, “You can’t make old friends.” Not only have these men been my friends for 30 years, we’re blessed to have married women who have grown together as friends for 20 years. In the past year I’ve realized how much I need my friends in my life—people who know the real me and who are honest with each other.

In a couple years time, together with these men, we will take the motorcycle trip of a lifetime. We will celebrate friendship, freedom and life. I am grateful for these men. Who are you celebrating in your life?

Valor

I love looking down and seeing my Valor Wide Ring while I practice my guitar. I wanted to design a ring with some heft to its appearance without straight lines. It’s a simple ring but the longer I wear it the more it takes on the marks of my daily life—from motorcycle riding to working out to handling my music gear.

I made it as a reminder that the mountains we climb in our lives—facing fears, taking risks, or engaging in personal growth—take determination and valor just to take the first step of the journey, let alone to press on once we’ve begun.

The best part about jewelry is that it takes the journey with us. Through obstacles and successes, our designs take on the memories. My Valor Wide Ring reminds me of all the times I took the first step towards something new and the courage it took to put myself out there. I need the reminder every time I begin to doubt myself.

When I started practicing guitar, I felt like I was beginning a long journey up a mountain. But with each practice session, I found the trail to the peak became less steep and more enjoyable. Now when I play, I feel like I’m on top of the mountain.

But I didn’t stop at this one peak, I kept trying to hit new heights. I put myself out there even more by performing in front of family and friends, and sometimes even strangers. I found that, while it requires me to be brave each time, performing music in front of others helps me grow.

That’s the true purpose of my ring. The first step of the journey takes determination and valor, and once we’ve finally climbed the mountain, we realize we haven’t reached the end, but have begun a journey that will carry on through our lives.

David’s Journey

Last Friday was the one year anniversary of David’s spinal fusion and the day the world shut down. It’s hard to put into words what we experienced during the night when he coded and we almost lost him. As fate would have it, he was scheduled for a minor procedure down Santa’s Barbara on Friday. Once the procedure was over, he had bronchial spasms post-Covid mixed with the anesthesia causing his oxygen levels to drop. It was another stressful day with Lisa on lock in at the hospitals and me at home meeting with Matthias’s teachers and getting him back and forth from school, while feeling helpless with David.

These episodes are more common in our lives than they should be. Honestly it’s more stressful and scary than I probably let on. I do so much to be strong for my son and my family, but in these moments I feel so helpless against these forces.

Recognizing the hard realities of David’s genetic syndrome (Cornelia de Lange) and how close we’ve come to losing him, I try to be present with him whenever I can and to be grateful for every day I get with him.

David and Lisa came home from the hospital on Saturday while I was out with a friend. After a strange turn of events lead to his 24 hour stay in the hospital, I was eager to get home to see them and be re-united.

Unfortunately, as I was driving home I saw a couple texts messages coming through and missed a call from Lisa. David’s breathing had turned rapid again and she felt they needed to return to the hospital in Santa Barbara. So, even though they had been home for a respite of a couple hours, they trekked off again before I had a chance to see them.

We FaceTimed—David in his Posey Bed (a gift to parents and kids alike in hospitals!) while I got to talk with him. He was looking at me and really connecting with me over the call. I was happy to see him smiling and happy this morning. It does my heart good.

As a dad, I always want to protect and mentor my kids. It’s important to me to be there and be strong for my boys. With Covid rules around the hospital right now, only one person is allowed in the room, so there’s no way for me to be with David. I feel cut off from him and Lisa and so helpless to do anything for them.

Meanwhile in our divide and conquer strategy, I was there with Matthias—talking with teachers, driving him to school and back and generally trying to hold down the fort of our home and businesses.

5 days later, David and Lisa came home! It had been a long few days of tests, breathing treatments, antibiotics, FaceTime with doctors and worry.

A strange phenomenon happens in hospitals after a couple of days. Somehow the reason you’re there gets lost and a new diagnosis for a new problem emerges. In this case we went from a minor oral procedure to recommending a G-tube in the time David was hospitalized. Knowing eating is one of David’s biggest joys and he has not even one time got pneumonia from aspirating in his food, we chose to skip the G-tube in favor of more information. We’ll check in with his regular doctors when there’s no emergency.

When you have a child with special needs, no one knows your child better than you. Just because someone went to medical school doesn’t mean you have to do what they say—especially in the moment. You can always take a beat, go home and get a second opinion. And, you have to balance preserving life at all costs with living real and full life.

We’re thankful once again for those of you following our family’s journey and for praying for us and for David. Most of all, I’m thankful to God for bringing my son home again and for being together as a family.

We Are Enough

Every night for years I’ve prayed my sons will know they are made in God’s image—precious and worthy and loved. I want them to know they never need to prove they are smart enough, educated enough, athletic enough, have enough money, are skinny enough, fit enough, good looking enough, get enough approval, successful enough, on and on and on.

I hear so many Christians these days ranting about how we need to know we are NOT enough. We’re sinful and bad, they say. Our very identity is as sinful people deserving God’s wrath. Meanwhile, our young people are riddled with anxiety and depression (and most adults too—we just think we hide it better). We want to blame the media, the culture, others—them. But significant research shows we parents are the biggest influence on our kids.

Friends, we are made in God’s image. Are we willing to say His craftsmanship is lacking? In Genesis it says he looked at humanity and called us “very good.” We look at our own babies and know they are precious and lovable. So are you and I.

Yes, we cracked God’s very good creation when we rejected Him in the Garden. Yes God sent His Son for us—because He so loves us! Yes, our creation is not the end of the story. But the biblical narrative is about God pursuing His creation, His people, because He loves us.

That means my boys, me and you have nothing to prove. God’s designed us precious, with dignity befitting His own image, lovable and loved. And that’s enough.

Freedom in Finding my Voice

I’ve loved music all my life. From my sister telling me how to sound like the Carpenters as a kid (I like rainy days, but Mondays still get me down!) to singing in the church choir to discovering the Beatles as a teenager, music has been a big part of my life.

Despite having musical parents and family on both sides, it’s always been an area of my life that’s hard to embrace. As a kid I was told many times, “Don’t quit your day job,” when I sang. People literally told me to shut up. (Who talks like that to children?) I dreamed for a while of being a rock star (seriously, who hasn’t? It really is one of the coolest jobs). I was shot down as too much of a dreamer.

Eventually I gave up on my musical dreams. I went to college and then seminary and became a pastor. Ironically, as a young youth pastor I was often called upon to use my limited guitar skills and voice to lead youth group worship. I would feel the pang of my love for my music calling, but knowing I wasn’t good enough, I put the guitar away again for years.

I’ve been on a long journey to re-discover who I am. As a part of my process a few years back I started taking guitar lessons. I knew it was time to embrace my musical soul. I’ve grown a lot in my skills and have spent hours and hours playing every week.

Last year I got the chance to play some gigs locally with a friend who believes in me and is helping me learn how to play gigs. I love playing for people even more than I thought I would, if that’s even possible.

This year my word, my focus, is ‘freedom.’ I’m trying things I’ve always been afraid to try. I’m stepping into areas where only the real me can show up. For me, I can’t sing without putting myself out there. So, taking one of the scariest steps I’ve ever taken, I started singing lessons in January.

Singing lessons are a way for me to take a risk to do something I’ve always wanted to do. Learning is a tricky thing. You can improve and find and reach your potential. But only if you allow others to tell you what you think you already know. Only if you humble yourself to listen to correction. Only if you work hard to practice and grow.

2021 for me is about finding freedom. Freedom to be who I really am. I am taking off masks. I am learning to step out from behind others. Freedom to find my voice in a very literal sense. Maybe one day I’ll sing a song about it.

Hitting Roadblocks

Churchill-painting-at-the-EaselEver find yourself trying to get momentum on a project only to be continually foiled by hitting roadblocks? I do. Lots of things can get in the way.

Fear

Procrastination

Laziness

Fear (of failure, of success, that there’s not enough money, that people will laugh)

Responsibilities

Distractions

Poor planning

Lack of skill

That voice that says you can’t do it

Did I mention fear yet?

I struggle with each of these demons. A recent issue for me is what I call bandwidth. I notice my ability to think shuts down long before my body does. When I was writing my dissertation it was difficult to do all the things I needed to do in the office. Right now, we’re in a busy season at the office. That makes it challenging to give myself to other parts of my life—family, my spiritual life, continued learning.

It’s a reminder to me of our limitations as human beings. I like having multiple irons in the fire and moving from one thing to another. I usually read multiple books simultaneously. I often have projects within my projects in each sphere of life I inhabit. The danger in all this is the potential failure to acknowledge the opportunity cost associated with taking on so much at one time. It’s obvious that time limits our ability to complete projects. We all know our skill, experience, education and talents affect what we can accomplish within a given time frame. What we often neglect to consider is the capacity of our bandwidth (you might call it your mental energy, ability to think, or other things) for a given type of task and overwhelm ourselves in one area. (I’ve heard that Winston Churchill liked to paint and do brickwork to relax and get a break from the meetings and reading and writing he did.)

I’m learning to re-prioritize my time such that I establish Sabbath time, priority time and response time each week. Honestly, this way of approaching my life is a new thing. But it’s revolutionary. I no longer feel guilty for taking the time I need to recharge and re-energize. I also don’t feel guilty for closing my door, turning off my email and working on the things that matter most—FIRST. Now, when I am in response-mode, I am free to give myself to others and their needs. This is new, but I’m excited and will keep you posted!

What do you do when you hit roadblocks?

 

 

CdLS

Changing Diapers Matters

CdLSI recently told Lisa, “Changing David’s diapers might be the most significant thing you do in a day.” Think about that for moment. A husband telling his wife that changing diapers might be the most significant thing she does with her time? It’s no wonder she recently helped me realize my burro-like personality! (read the story) To give this comment greater context, in case you don’t know about my wife Lisa Leonard, she is a well known and beloved blogger (my friends joke that I am “Mr. Lisa Leonard”), we run a company together—she does all the creative stuff that people actually like while I do the office stuff, she is a fantastic listener to whom people can pour out their hearts, she is a conference speaker, she’s been on TV and more. And I, the husband tell her the most significant thing she does is change diapers.

A little more context. David is ten. We’ve been changing his diapers for ten years. (When I say we, she does about 90% of it compared to my 10%.) I won’t compare how many diapers we’ve changed to others—everyone’s circumstances are different. Still, it’s about the most mundane, tiring thing we do in a week. If diaper days were over, we would throw a party. And I say to her, “Changing David’s diapers might be the most significant thing you do in a day.”

Here’s the thing. We look forward to the resurrection and the day when God will set the world to rights. I think on that day our son, free from Cornelia de Lange Syndrome, ten fingers and ten toes will look at his mom and say “Mom, thank you for taking care of me when I couldn’t take care of myself.” It is an act of sacrifice. It is an act that is for David. It is an act that dignifies his humanity. It is an act of love.  While there are so many people Lisa touches in a day through her blog and our business, as significant as those encounters are, there is a qualitative difference.

And, while this is true of a mom helping her son with specials needs, it actually illustrates a bigger point. In a society driven by a search for significance, often measured by how large our influence is, or how big an income we have, or how high we attain on the success ladder, perhaps we need to rethink how we measure significance. It may just be that the most routine, dirty, unenviable tasks you and I do in a day are the very things in which we are making the largest difference in the world. It’s not sexy, it’s not glamorous, but it may just be true.

Makes me think I need to change more diapers! What do you do that’s routine, or unenviable that might just be more significant than you think?

I’m an Artist

Matthias Drawing at a Pub in England

Matthias Drawing at a Pub in England

I am not an artist, our youngest son Matthias is. He will tell you readily. When a person meets him, it is the number one label he gives to himself. And who am I to argue? Wherever we go and whatever we’re doing, Matthias has a pad of paper and a pencil. He has spent hours drawing on tables at restaurants, in waiting rooms, in the UCLA cafeteria while we wait for his brother during doctor appointments, up in his bed at night, and just about anywhere else he can find to pull up and start drawing.

Matthias Drawing at Lunch

Matthias Drawing at Lunch

Last year for Mother’s Day, He decided to make a book for Lisa. Of course it would be a superhero book. (What else would mom want anyway?) To make it special he decided it would be a book of superheros with names beginning at A and going to Z. And, each chapter (yes, I said chapter) needed to have at least three superheros. In the end it was 52 solid pages of superhero awesomeness–not bad for an 8 year old kid! (I won’t mention how I thought it would be a good idea to bind it and make color copies for grandparents, aunts and uncles. I worked it out in my head and the cost seemed pretty reasonable. Until we picked it up. Let’s just say, it’s the most expensive Mother’s Day gift to date.) Of course, we were impressed that the first book out of the Leonard house came by the hand of our 8 year year old son.

Matthias Drawing at a Restaurant

Matthias Drawing at a Restaurant

Now, it goes without saying that I love this kid and am a proud dad. Am I bragging? A little bit. Do I want everyone to know what an awesome kid Matthias is? Yes. But that’s not why I share all this. I share it because Matthias is an artist and he pursues it with the abandon of a child. He’d love for everyone to love his art. But that’s not why he draws. He draws because he loves to draw. He loves to create. He doesn’t worry whether people will like his drawings. He doesn’t get hung up about what to draw. He just draws. It’s pure and it’s beautiful.

Matthias Drawing at Church

Matthias Drawing at Church

As I get ready to turn 40 this year, I find I have never been so willing to let expectations and perceptions shape my pursuits. But how much do I do these days because I love it? How often do I identify myself with the things I love to do? I’m a writer. I’m a speaker. I’m a preacher. I’m a singer. I’m a cyclist. Even worse, how often do I engage in these activities and find every square inch there is in which to fit these things into my life? Not enough. I’m on a journey to do just that. I want to be more like my son, who now 9, has multiple books and art projects in the works because it’s who he is. I want you to join me. What do you love that you put off for 100 excuses? Let’s share and encourage each other!

“That Sucks” Best. Words. Ever.

David at Birth 07/04/2002

David at Birth 07/04/2002

July 4th 2002 was one of the best and darkest days of my life. After months of eager anticipation, days of anxiety and hours of fear, Lisa and I welcomed our son David into the world.

Lisa went in for her 36 week pregnancy check up (I almost didn’t go as they had become so routine) and the doctor told us she was measuring small–for 31 weeks! Thus began the whirlwind.

Over the next couple days we sought answers, saw more doctors, were told his small size “could mean anything” by the ultrasound doc at the hospital. I asked what she meant. Her reply? “It could be nothing. He could have a genetic disorder. It could be fatal.” Confusion and panic set in as we checked Lisa into the hospital to induce labor and play the waiting game.

In these anxious hours dear friends began to encourage us that it would all be OK. People tried to cheer us up and take our minds off of things. “I have a feeling it’ll turn out alright.” “Don’t worry, we had a scare with our first pregnancy too.” “Doctors make a big deal out things. I’m sure it will be fine.” To this day I am thankful for those people who were in the thick of it with us. Some of their words gave us false hope and even hurt for a time afterward. But, Lisa and I felt loved by our church family and close friends. They sat with us on the phone and brought Lisa El Burrito Jr. in the hospital when she wasn’t supposed to get it.

I remember cheering Lisa on as she endured labor. Both of us afraid of what lay ahead.

“Push baby! We’re going to meet our son!” I called out to her while wondering inside if our baby would come out dead or alive.

I encouraged her, “You can do it Honey! Just a little more and we get to meet our beautiful son!” All the while thinking, You have to do this Lisa! Just a little more and we learn if our son is beautiful, dead or alive.

Finally, on the afternoon of that 4th of July (Lisa favorite holiday coincidentally), little David burst forth at a whopping 4lbs 2 oz., seven fingers, ten toes notably missing the crying sounds we had heard from down the hall every few hours as new lives emerged into the world.

24 hours later we learned David’s diagnosis. Cornelia de Lange Syndrome. We had shuffled quickly back to Lisa’s room leaving our son in the N.I.C.U. while we poured out our hearts in grief, when a knock came on the door. For some unknown reason I opened the door to find Rick, one of our church elders, standing there. I didn’t know what to say, but he quickly realized he happened upon us at a bad moment and excused himself.

As I began to shut the door I realized I needed to share our awful news with someone and chased after him down the hospital hallway. “Hey Rick. They just told us a couple minutes ago that David has a genetic disorder called Cornelia de Lange Syndrome.” And the next moment is burned into my memory. Rick’s face dropped. He staggered backward until his body found the wall behind him. He looked me in the eyes, compassion on his face and said “That sucks. Steve I’m so sorry.”

Now, I know you’re not supposed to say “sucks.” I know stories like this are supposed to have some moment of profound wisdom and a turning point where everything turns out alright in the end. But this is real life. Those words have been a balm to my soul from that day until this one. Rick’s words gave me freedom to see that Cornelia de Lange Syndrome ought not to be in the world. It’s a sign that something is gravely and pervasively wrong in the world. Rick gave me freedom to hurt and weep and and question God and eventually to pick up the pieces again and move forward.

I’ve walked through many hard moments with a great number of people since those days. I’ve sat at bedsides of dying and dead loved ones as a pastor. I’ve cried with friends enduring divorce. I’ve been in the hospital with people in crisis and more. I can’t remember all my words today. I know my own temptation toward platitudes. I know my instinct to try and make it OK. Still, the best words anyone has ever said to me came at the darkest moment. “That sucks.” Best. Words. Ever.

What words has someone shared with you that spoke to your heart in a time of hurt or crisis?