March 12 Celebration Day!

We’re celebrating March 12 in our home this year! March 12 of 2019, 2020, & 2021 saw David in the Pediatric ICU at UCLA fighting for his life against a lung infection. Any parent with a child with special needs knows hospital stays and frequent specialty doctor visits are a part of life. Doing this for nearly 20 years I can tell you, the scariest hospital stay is the one you’re in. You never know in the moment how it will turn out.

Last weekend our family was hit by a bad cold complete with cough and serious congestion. It knocked down Lisa and Matthias pretty hard for a number of days. We tested everyone for Covid and were able to check that off the list. When David caught it, we got vigilant. At first he was fighting it off, but then we saw it start to get the better of him. With March 12 in mind, our anxiety began creeping up. 

At this point, Lisa and I know the signs when things start heading toward infection and pneumonia. We’re watchful for the subtle signs. As his cold progressed we ramped up every treatment in our arsenal. We increased his respiratory vest (why oh why did no doctors prescribe this for the 18 years of his life??), we increased the number of times he was getting albuterol. Lisa called his primary doctor to see about an appointment and antibiotic. IN the time between the initial cautionary call at 8 in the morning and getting everything sorted by the afternoon, it was clear David needed the antibiotic (thank you Dr. Bravo!)–such is the way things turn so quickly with David. David had a rough weekend–sleeping lots, low energy, lots of congestion.

But each day his spirits got better and we got more and smiles from him. By Tuesday last week he was back at school! He’s been smiling and laughing all week. I’ve shared about challenges we have with David’s health care before. We live knowing one of these infections may take a turn for the worse.  But today we’re celebrating! David is doing great and has started March 12, 2022 his feisty, rascally full-of-opinions self at home and is doing doing great. This is a day of celebration!

What in the World is Happening?

Thoughts On Russia’s Invasion of Ukraine

This past week has been a scary time in our world. Russia’s invasion of Ukraine has once again questioned the stability of our world and the lives we lead. As we read the news reports it’s full of mixed messages—is China collaborating with Russia to destabilize Europe and the U.S.? What images are from this conflict and represent what’s happening in Ukraine? How long will this go on and where is it headed? Are we at the beginning of the path leading to World War III?

These questions and more are going around at work, with friends, and around our dining table at home these days. In some ways, it feels so far away and like someone else’s problem. But it also feels like it could turn into something much scarier.

During Russia’s military build up on Ukraine’s border last week, my son Matthias and I had a chance to talk about this conflict. We’ve been reading through the Bible together this year and meeting Friday morning before he goes to school to talk about what we’re reading and what’s going on in our lives. I’ve wanted to read through the Bible with him like this for a long time and felt excited when he came to me saying he wanted to read together his senior year before he goes away to college.

At first, it might seem like a daily Bible reading and weekly meeting doesn’t have much relevance to this war that has erupted in our world. But our reading has been establishing the building blocks for the way we see the world. When we see a war in our time it’s important we know the Bible has recorded these kinds of conflicts for thousands of years. The Bible is no stranger to power hungry despots inflicting pain in an attempt to make a name for themselves.

Since the man and the woman encountered the serpent in the Garden of Eden, humanity has faced the choice about whether to seek their life in the exercise of autonomous power or to find life in submission to the loving Creator God.

The end of the Story is so helpful for framing our own day. The book of Revelation is usually seen as a mysterious book with hard to understand timelines about the end of the world. Sadly, like many things in the Church, we have managed to take a message of hope and encouragement and turn it into something to avoid.

In reality, John wrote the book of Revelation to a suffering first century Church to say, “No matter how bad it looks, no matter how bad it gets, persevere and trust the Lord. He is in control and will set everything right in the end.” It’s easy to lose sight of the Story we live in.

When we encounter worldwide pandemics, fires ravaging our lands, contentious political elections, and warring countries, it’s easy and even natural to feel scared and anxious about how it will all turn out. But the story in which we live is one that begins in a garden, endures widespread power grabs, sees a savior take the world’s pain on His shoulders on our behalf, and ends with heaven and God’s presence coming to earth.

“Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. 2 And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. 3 And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. 4He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” (Revelation 21:1-4)

As we read the news about Vladamir Putin’s war on Ukraine, may we take these words to heart. May we pray for our believing brothers and sisters on both sides of the conflict. Pray for a quick end to the violence and for Ukraine’s firm resistance to the Russian forces. Whatever happens, may we live in the Story beginning in the Garden, ending with God’s presence on the earth, and may we find comfort and courage to engage our world.

Christianity is Not About Morality

Christianity is not about morality. No caveats. No qualifications. No stipulations.

My friend, we’ll call him Tim, sat across from me at dinner explaining how hard his life has been trying to live up to expectations—from his parents, the church, even God.

“My dad (a para-church minister) gave me this framework that was terrible. He told me ‘There are no boundaries, you just have to reach toward the center.’ It was so grey, I didn’t know what to do with it. No matter how good I was, there was always a sense where I heard his voice, ‘You could have done more Tim. You could have done better Tim.’ I hated it—to the point I literally thought I was going to hell as a little kid because I saw a candy wrapper on the ground on my way home from school and didn’t pick it up and throw it away.”

Oh man, that’s terrible. That’s not the Gospel at all. I tried to encourage him.

“It was so helpful when Pastor Tom said ‘God gives us a double yellow line that creates a box. Inside the box, there’s total freedom.’ My problem is living inside that box. But at least I know the rules. I know what a moral, God-honoring life looks like. I struggle to live it out in my life and I still honestly feel a lot of guilt. I just need to try and avoid crossing the boundaries.”

But Tim, both of those paradigms are wrong. They’re not biblical. Christianity is not about morality at all…

He cut me off, anger in his eyes, “No, you can’t say that. God wants us to live…”

Tim, I interjected, seriously, you need to listen to me.

I love my conversations with Tim. We are both strong personalities and prepared to debate each other. Neither of us worries about hurting the others’ feelings and we tend to understand each other quickly. Best of all, Tim is one of those people who takes growth in his life and faith seriously. He is not content to remain stuck in the issues that hold him back professionally, personally, or spiritually.

Tim is real in his struggles. We have been there for each other at times when our lives were out of sync with who we want to be. I knew the conversation was turning real and I truly felt God’s Spirit at work between us.

Tim, the problem in the Bible is not a moral problem. If the problem was immorality in the Bible, then the solution would be about the need to be morally upright. But’s that’s not the language of the Bible at all.

In Genesis 3, Adam and Eve do not commit an immoral act. They didn’t listen to their Creator’s voice. They broke relationship. God told Adam and Eve where to find life—everywhere in the delightful, lush garden He had created for them! And where to find death—the fruit of one tree. Designed to be stewards of the King in His cosmic Temple, made to be co-creators in the good world God had created, humanity chose death and to disconnect from their Creator.

Check it out—have you ever noticed, God’s response to Adam and Eve? Without doubt, He clearly tells them the curses they have brought upon themselves—pain, difficulty, toil, and death. Exactly what he warned them about. But His own response is merciful, gracious, and loving—removing them from the eternal state of enmity with God by taking them out of the Garden of Eden. And providing clothes for them to cover their nakedness and shame.

For the rest of the biblical narrative, it’s never about morality. It’s always, about God pursuing His people. He is always trying to restore humanity to its original calling to rule and fill the earth as His agents.

As he says when he delivers the people of Israel from slavery in Egypt, “I will take you to be my people, and I will be your God, and you shall know that I am the LORD your God, who has brought you outfrom under the burdens of the Egyptians.” (Ex. 6:7) The biblical story is about God restoring us to relationship with Him despite ourselves.

Tim looked at me. He didn’t say a word—that’s a big deal. I could see him taking in what I said.

“I’m going to have to take that in. I know the gospel is all about grace, but I’ve never really seen my life through that lens before.” He offered at last.

Do our lives take on an increasingly different look when we are in relationship with God? Yes, without a doubt. We see that truth in the world and the Bible clearly teaches it. But the Bible is not a Christian version of Aesop’s fables, with heroes to imitate, villains to illustrate the wrong path, and a life moral at the end.

The Bible is the story of the Creator’s unrelenting pursuit to bless and love His Creation through His people and ultimately His own Son. Live like God’s love for you is that high and deep and wide, and live in that freedom.

The Leonard Family is Moving!

Big News over here—we’re Moving!

When David turned 18 in 2020, we had to go through the process of getting a conservatorship for him. We thought it would just be formalizing the reality that we will keep doing what we’ve always done—acting on his behalf as his parents. But the process opened our eyes to the realities of caring for an adult with severe special needs. Where will he live? Who will care for him as we age? Will we put him in a home? It was  way more emotional than we thought it would be. The social worker was fantastic and presented us with a lot of information and food for thought.

We’ve never wanted to put David in an institutional home. It’s not wrong and I support anyone for whom that’s the best choice for their situation. But I know if we do that, we’ll see him a lot at first and less over time—that’s the way real life works. Based on our social workers suggestions, we began dreaming we might be able to find a house with a little property and a back house that can be David’s one day.

We’re blessed to have an amazing team of caregivers for David, who take him on his own adventures, help with his daily needs, and become part of the family over time. That combined with his own space on our property one day, seemed like the best of all worlds.

A few months ago a friend told us about a mutual friend selling their beloved family home and their desire to sell to someone they know. We know the family well from my days serving as a pastor—I prayed at their son’s wedding in the backyard, we’ve attended events there and have seen the ways this home has been a place of service and love embodying the Lord’s reconciling work in the world. We couldn’t believe it had exactly the features we were looking for! We all thought, crunched numbers and prayed.

The Lord opened one door after another and we just closed escrow. Now we’re preparing to move into our new place!

Lisa and I love collaborating to make a space ours, so we’re deep into our little reno project. We’re updating counters, doing a fresh coat of paint and a few other small changes. We pulled out a closet from the room that will be my office to study and work in—I’m stoked on the extra space and anxiously awaiting the bookshelves we ordered to unpack my library. (Putting my books into boxes is one of the emotionally hardest parts of moving for me!)

As we dream about this space we feel blessed to get in before Christmas so Matthias will have some Christmas and family memories in this house before heading off to college next year. We already have friends and family lined up to stay with us, help out, and celebrate Christmas together at our new place. This house has a history of hospitality and ministry we intend to build on going forward!

Look for more to come about our project here on the blog and in my social feed!

Give Voice to Hard Things

Yesterday was an exhausting day. We’ve been doing checkups with David’s doctors at UCLA since he aspirated under anesthesia in March. Ever since they keep pushing a G-tube and keep telling us how we’re putting his life at risk. Yesterday the doctor recommended palliative care and said we may even need to discuss hospice! To be clear—David is NOT dying. He’s doing great!

In 19 years of doctor visits, it still blows my mind how fragmented their recommendations are sometimes. It’s like the old saying, “When all you have is a hammer, everything becomes a nail.” When all you have is 7 minutes for patients (recommended time for a doctor to be in a room with a patient!), a specialty, and the last doctor’s notes, it doesn’t leave much room for a holistic picture. It doesn’t leave time to consider the impact of words on families.

I don’t think most people realize the burdens parents of special needs children bear. Every night I wonder if it’s the last time I’ll put David to bed. Every cough and sneeze threatens to become the pneumonia that will finally take him. On the other side of the equation, there are questions of how to care for an adult with around-the-clock needs over the next 5, 10, 20, or more years. There are the daily considerations of which activities your child can participate in and how that impacts every member of the family.

I don’t have any deep conclusions here. I’m grateful for the overall amazing care David gets and the many people who love him and our family well. This is just a heavy week. Sometimes it’s best to give voice to hard things.

Thoughts on Dad Guilt

Father and son relationships are sometimes challenging, often complex, and always special. As both a son and a father, I have experienced the range of how good and hard this relationship can be.

It hit me recently that we only have one year left before Matthias heads off to college. I’ve watched him over 17 1/2 years grow into a thoughtful, creative, and integrous man. I find myself reviewing all the things I want to teach him, evaluating the state of our relationship, and looking for ways to build memories together.

We hear so much about mom guilt, but dad guilt is real, if less talked about. We need to try our best to invest in our kids, knowing we can’t live up to even our own expectations. But we have to keep up the effort even when (especially when) it’s tough.

Celebrating David’s Birthday

19 years ago—seriously, 19 years ago! We welcomed our amazing David into the world. The 4th of July 2002 brought pain and joy I had never felt before.

At Lisa’s 38 week check-up we learned our precious baby was measuring only 32 weeks. The news set in motion the most anxiety ridden 48 hours of our lives. A high-tech ultrasound revealed nothing.

Eager for information I asked the doctor, “what does his size mean?” She looked at me blankly, “What do you mean? It could mean anything. He may be undernourished, he may just be small, he may have a genetic syndrome.” Confused I pressed for more, “What kind of genetic syndrome? What issues would he have?” She coldly replied, “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 was crumbling around us. Anxiously coaching Lisa as she was induced so could meet our son, I feared the unknown. I had to be brave for my wife and for my son.

David at Birth 07/04/2002

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. That July 4 my heart was broken. My heart was full. I was gutted and I was happy and proud. David’s sweet little face revealed he had no idea what everyone was so worried about. He was content and happy. Our precious son was born. I became a dad.

Through David, the Lord showed me our value is inherent—unconnected to what we do. Every one of us is made in God’s image—precious, valuable, and loved. I see it so clearly in David, no matter how hard I find it to believe about myself. David lives life in the present. Sad when he’s sad. Happy and giddy when he’s happy. He’s an adventurer, a musician, a jokester, and a lover of people. I’m thankful for my amazing son and the last 19 years as his dad.

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.