My Family – My World

I love little stolen moments when Lisa and I can get time with one of our boys. I used to undervalue how important my family is to me. As a man so much of my identity gets caught up in my career. I’m thankful, through a lot of therapy, God’s love, hard work on my marriage, and good friends, I’ve regained the perspective that no one in the world is as important as Lisa, David, and Matthias.

This little mischievous smile on David’s face cracks me up! He doesn’t talk, but he’s got a lot going on in there! Dads, remember how much you mean to your kids. They need your encouragement, instruction, and love. Families, Dads need the same from you—even when they don’t express it well.

This Sunday is Father’s day. So spend time celebrating all the fun, challenging, and important parts of being a dad with the people most important to you.

And if you need a gift that sends Dad a message, check out the shop (we have a huge sale going on!)

Practice Won’t Be Perfect

“Only perfect practice makes perfect.” But if only perfect practice makes perfect, only the perfect could ever practice and no one could ever learn anything new.

The truth is we all start bad at anything worth doing. Learning guitar has taught me it takes time to teach my fingers and my brain to form the correct chords with the correct strumming to play a song. Learning is hard and rewarding.

I created and wear the Valor Ring because it takes determination and valor to take the initial step and sign up for the journey. Whether you’re learning to play guitar, taking on a home project, prepping for a promotion at work, taking steps to improve your relationships or more, perfection is usually the enemy of progress. But we can all practice, even if imperfectly.

Whole World – Cornelia de Lange Syndrome Awareness

Eighteen and a half years ago Lisa and I felt the world crack under our feet when the doctor told us our precious son, whom we’d been eagerly awaiting to meet for the first time, showed signs of a having a genetic disorder.

“It could be anything from no issues to death, I just don’t know.” David wasn’t even born yet and already the life we envisioned as crumbling around us. 

The next days were anxiety filled as Lisa was induced and we prepared for our little guy’s birth come what may. 

On July 4, 2002 David arrived—quiet, a full head of hair looking like a rock star, small, only two fingers on his left hand. The doctors whisked him to a tiny exam table set up in the room, conferred and called me over, pointing out various atypical features from head to toe. They wrapped and handed him to me to take to Lisa, the awaiting, brand new momma. I wanted to fix him, to hide the obvious, to wake up and find I was holding our healthy baby in my arms. 

I gently handed David to Lisa immediately pointing out his little hand and a couple small features. My mom was a nurse, so I learned young to face hard things like this head on no matter how I felt. Lisa took David’s little hand in hers, stroking it gently, “Hi David, I’m your mom. I love you.” 

The next day a doctor came to us in the NICU and told us, “your son has a severe genetic disorder called Cornelia de Lange Syndrome. He likely won’t walk or talk. I’m very sorry. I will bring you some information.” We didn’t see that doctor again.  

CdLS occurs in approximately 1 in 10,000 live births. CdLS is not a “one size fits all” condition. A person may have from a few to many traits of the syndrome including: Low birth weight, head and overall size;Developmental Delays; Gastrointestinal issues; Behavioral Issues; Particular Facial Features; Limb Differences; and more. 

As we celebrate Cornelia de Lange Awareness Day today, David has shown himself to be a fighter. For all the challenges and medical issues, he has faced over the tears, he faces it with courage and determination. David loves to laugh and loves music. He’s sensitive to others and seems to always know who needs a hug in the room. 

Our family’s life looks different than I imagined when Lisa and got married. But the last 18 years have been full of love, resilience, fun. We have learned a lot about ourselves, life and God. And the world feels more whole because David is in it.

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.

30 Day Living Inspired Email Journal

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These have been a crazy couple weeks and there’s no obvious end in sight. Our family has been in the throws of our son David’s scoliosis surgery complete with lung infection and an 11 day hospital stay. His surgery happened to coincide with the largest global pandemic in history. Timing is everything! Even as we face our own personal crisis, everyone has been facing increasing challenges over the past couple weeks. From suddenly becoming a nation of home-schoolers, to job insecurities, to compulsive handwashing and more, each day seems to bring its own unique obstacles none of us has faced before.

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30 Day Living Inspired Email Journal

With so much bad news out there, increasing isolation from each other and more time on our hands, I’ve been thinking about what I can do to help right now. I have created my 30 Day Living Inspired Email Journal to help us use this time positively and to build our resiliency for when we come out the other side. Beginning April 1 (no April Fool’s joke!), each day I will deliver a short inspirational thought with a journal prompt each day for the next month. My goal is for this to be a 5 minute exercise to start or end your day well while we’re hunkered down. Of course, you can take longer if you want! So grab you favorite journal, or pick up a Discover Leather Journal from my shop and join us!

It’s a great resource for moms managing their families at home right now (let’s be honest, in most homes moms shoulder the brunt of these times—many of them while balancing their careers!), or for guys working from home who want a tool to get in the right headspace each day, it’s great for work teams to use together to maintain a sense of team spirit while physically separated, and more.

Let’s Connect on Facebook!

Because community is so important, I’ve created a private Living Inspired with Stephen David Leonard Facebook Group where we can gather together to share our insights, ask questions, encourage each other and help each other through this crazy time. I’ll post additional thoughts and videos there and engage each day so we can be connected (I’m an extrovert, so I’m looking for any way I can to connect with others!). We already have a fast-growing community there and would love for you join in!

From raising a son with a severe genetic disorder, to a decade of pastoral experience, to owning my own business, I have experienced challenges, crisis, and I’m working to overcoming the rollercoaster of uncertainty. The 30 Day Living Inspired Email Journal and Living Inspired with Stephen David Leonard Facebook Group are both free resources to inspire us during these difficult days. I want to share my experience with you and give you a tool that can help you right now. We’re all in this together and by banding together we can thrive.

How do I join?

Simply sign up for my regular emails and you will receive each daily email plus get insider info on any special deals or news from stephedavidleonard.com! It all starts April 1!

Want community? Join my Living Inspired Facebook Group!

Thank You!

I’m thankful for the way you have followed our family’s journey with David these past few weeks. Now I want to give back to you. Please join me, I look forward to seeing you there!