Category Archives: Real Life

Strong and Brave

We spent anxious hours awaiting your arrival. When you arrived, we rejoiced and cried. The doctors showed me your little hand. Your mom took you in her arms, “Hello David, I’m so happy to meet you,” as she smiled at you. You squeaked out your nearly imperceptible cry. Our hearts hurt. We were so happy to be a family of three with you in our lives.

When you came home, I held you and crept into your room to check on you often. Each time I entered your room, I prepared myself to find you were no longer with us. I prepared myself to be strong and brave for your mom. Each time I found you to be the strong and brave one. Lying in your crib peacefully sleeping, crying for food, or ready for snuggles. Four pounds, two ounces, you had no idea how you demonstrated the strength and resilience of a Navy Seal, surviving and thriving every day.

You didn’t walk until you were five. Then one day at church, you got up and quickly crossed from one side of the gym to the other. We could hardly keep track of you! You have never uttered a word, but you have learned to tell us what you need. You find those who are hurting in a crowd and show them comfort and love. You have looked in my eyes and asked why. You have told me you love me. You have penetrated my soul.

You had six surgeries by the time you were six years old. You have spent hours in waiting rooms, doctor offices, and hospitals. Each time, I swallow my fear to be brave for you, your mom, your brother. Each time, I fear losing you. Each time, you again prove you are the resilient one. You are a fighter, a survivor, someone who thrives.

We nearly lost you between Christmas and New Years of 2015. Suddenly hit with pneumonia, O2 levels well below critical. Your mom’s instincts saved your life. 24 hours after arriving at the ER in Cambridge, you were up, feisty and ready to get moving again. Not until then could we allow ourselves to grasp how close we came to losing you that night. Your mom and I wept out of joy and unreleased fear. We welcomed 2016 with greater joy in the mundane reality the four of us would board the plane together back to the U.S..

Your recent pneumonia again had us worried. For a week I entered your room multiple times a night, reliving those early and anxious days when you came home from the hospital. I don’t know how many times in 15 years I have entered your room, my heart beating fast, braced to find you gone—ready to be brave for your mom and brother. I’m the dad, it’s my job to be strong for our family. Again and again, you show you are the brave and strong one. You refuse to give in. You have too much love and joy to offer the world. You are made in the image of God and you reflect Him to the world everyday as you create music with your keyboard and as you relate to others with your hugs and smile and laugh.

We have celebrated every milestone of your life. Every birthday we take note. Every school transition marking another achievement in your small and remarkable life. I couldn’t imagine this day when you were born. Today you turn 15. David, you are one of my heroes. You show the strength of a grown man. You show the courage of a warrior. You are strong and brave. Today I celebrate you my dear son.

Who is strong and brave in your life?

Brothers

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The other night at dinner, Matthias stared down at this food, his eyes going back forth thoughtfully. He looked up, eyes full and moist,

“I want to talk about having David as my brother. (I love you David and this isn’t about you and I don’t mean to be rude.) I’ve experienced a lot of loss. I don’t have a sibling rivalry. I can’t hang out with David like a typical brother.”

Lisa and I exchanged looks. Matthias has spent countless hours in doctor offices. He’s endured the frustration of a brother who knocks over his toys and gets in his space without being able to retaliate. He’s spent hours alone in the same room as his brother, when other brothers would be paying catch or wrestling.

“I’ve learned a lot from David and am probably more sensitive to other people as a result. I’m thankful for that. But it feels really unfair. It’s hitting me that I’m probably never to going to meet David’s wife. I’m not going to meet his kids. (No offense David.) He’s probably not ever going to get married or have kids.”

As he says these words it takes me back to Torrance Memorial Hospital where the boys were born. I can see David, his seven fingers, his little body. I hear his faint newborn cry. I see the doctor in front of Lisa and I:

“We have run tests and reviewed your son’s condition. We believe he has Cornelia de Lange Syndrome. With this syndrome he will never walk, talk, have children or lead a normal life. I am very sorry.”

Today Matthias is receiving the same news. He’s always known, but never truly understood until now.

He turns to me, “We’re never going to be able to go out and grab a beer together.”

He looks at Lisa, “Mom, you get together with your sisters for your birthday. You guys get to go to Santa Barbara or San Francisco for the weekend. I’ll never have that with David.”

The moisture in his eyes and the early teenage angst in his face intensify. He looks between us, his parents. I want to explain. I want to tell him it’s OK. My heart beats and aches in my chest. I hate hearing the mature pain in my young son’s soul. I hate the painful tension in his eyes.

We say nothing. We wait.

“I feel really sad about that. It’s hitting me lately. I’m angry at God that He didn’t change this for David. He just let it happen.”

I know the feelings Matthias is sharing. I felt them when David was born. I feel them when David gets sick. When David races into the room where I’m playing my guitar and begins to bang out a couple notes on his keyboard. I know he want to play Beatles songs with me. I feel loss and anger he cannot pursue his innate love of music with me. It’s dishonest for me to say I don’t relate in my heart.

“I feel sad too Son. I feel angry at God at times too,” I admit. “I can relate to your sense of loss. I want to meet David’s wife and kids too. I see how you have a brother, but don’t experience all the brother things—wrestling, looking out for each other, playing games together. I feel privileged you are sharing your thoughts and feelings with us.”

But this is not the full story.

“I think God feels sad and angry about Cornelia de Lange Syndrome too. We live in a broken world. God did not want the world to be like this. And you’re right, He has allowed it to be this way. But that’s not the full story. He’s also pursuing His creation to redeem and restore it to the way it’s supposed to be. I’ll be honest with you Son, I don’t understand it all either. I feel the tension—if He’s going to fix the world, why does He allow the world to be like this. I could give you a lot of impressive theological answers, but the truth is, I don’t know. I just take comfort knowing this is not the world God wants and one day it will be different. One day David won’t have Cornelia de Lange Syndrome. We will be free of the pain of loss. Until then, we live in the tension.” Sometimes an unbearable tension.

We all live in this tension. You may care for an aging parent. You may be fighting a life-threatening disease like cancer yourself. You may have lost a loved one. A hard marriage, an unfulfilling job, financial trouble. We all know the pain and loss of a broken world. We live everyday with joy and pain side by side. We all know this is not the way it’s supposed to be. I take comfort though it breaks our hearts today, one day it will be different. And sometimes, like Matthias, we just need to tell someone who will listen. We need to be able to share our fear, our sadness, our anger knowing it’s doesn’t make us less, but makes us human. Knowing God stands with us in the tension. Knowing God understands the pain.

Are you living with a sometimes unbearable tension?

Grateful

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Today I’m grateful for my wife Lisa and our marriage. I have not always been. I have always loved Lisa. We’ve talked many times about how we think we have a good marriage. Still, I am not generally a very grateful person. I take a lot for granted in my life. The closer and more dear something or someone is to me, the more I tend to assume them.

Many times I’ve met with coaches, advisors, friends to whom I complain about the lacks I feel in my life. I haven’t accomplished the professional position I hoped for. I am not on the career track I want. I haven’t attained to the financial status I desire. I haven’t made a big enough contribution to the world. And on my list goes. The reverberating theme: I haven’t done anything worthwhile with my life. My life doesn’t count for much. I don’t count for much. Many times my counselors have told me how I have much to be proud of and grateful for. A beautiful and amazing wife. I’m raising two incredible boys. I’ve grown our business. And more.

No matter how many times they tell me, I haven’t heard them. I discount every treasure, every accomplishment and every person I value.

This past year has been a year of intense lows and highs. Lisa and I struggled in our marriage as never before. We each struggled personally as never before. Our business went through intense challenges and challenging successes. Our boys hit junior high school and the early teen years (if you’ve experienced this unique stage of parenting, you know what I’m talking about!). 2016 was a hurricane.

As 2017 opens, I find myself at peace. Grateful. For the first time, I see the true treasures I have in Lisa and our boys, David and Matthias. The relationships I assume the most—those are, in fact, the most valuable.

I am thankful for Lisa and who she is. I see her more clearly than I ever have. She is thoughtful, caring, and works hard for our family and our company. She is a savvy, practical person in business and life. Her creativity inspires me and blesses many. She’s grounded. She loves me. I could have lost all of that. I am grateful for her. To have partner in business and life.

Lisa and I accomplished great things in 2016. We hit goals with the business about which we’ve dreamed for a long time. We finally got the kitchen remodeled after 6 years of talking about it. We went places and saw things we never dreamed of seeing. But for all that, our marriage is our number one accomplishment of the year. We helped each another gain ourselves. We gained a better family for David and Matthias. We gained one another.

Today, I am grateful.

Getting Done What Matters Most

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I don’t want to miss out on the important stuff. Because life is busy, I set goals and review my priorities regularly.

I sat down the other day to review my goals for the year. I’ve been convicted recently that I need to grow in the ways I show love to the people in my life. I was thinking and praying and writing. Right at the moment I started getting into it, David walked up, reached out his right hand and rested it on my hand as he looked off into the distance. This is David’s way of asking to be picked up and held. I was busy, so I said hi to him, told him I couldn’t pick him up right now, removed his hand and continued working.

A couple of minutes went by. David came back and again placed his hand on mine—interrupting my writing this time. Again, I acknowledged him and sent him away.

A few minutes later the same thing happened again. David, standing in front of me. Hand on my hand, keeping me from writing down my thoughts and goals about living out a life that shows love better. I was annoyed.

That morning, I was focused on what I was doing. David was interrupting me. I was trying to get things done. I was working on something important. I didn’t have time to pick David up. I need time to focus so I could live the life God has called me to live.

Meanwhile, David kept coming back asking for attention. I told I love him. I told I saw him. But really I just wanted to get back to what I was working on and focus on my work again.

David persisted. And as I thought about my goals as a father, I thought about how one of my goals is for my children to know that I love them—that they are important to me. I want to spend time with them. And I began to think about the day I may not be able to hold him. I may not be able to hug him. So, I stopped. I stopped trying to figure out what my life is about and decided to live into the life I have. I stopped writing what I want to be and decided to be that person. At least in that one moment. I picked him up and held him. Nothing important got done. But we did the most important thing.

When have you almost missed the most important thing?

Wiping Tears Away

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Over Christmas David sprained his foot. He was crying and it took us a few minutes to figure oru the real problem. Just that night he had been climbing the stairs at his grandparent’s house during a family gathering. When your child has special needs (David has Cornelia de Lange Syndrome), you notice when they suddenly ascend the stairs. On their own. Five times.

We celebrated of course. Then, one barely noticeable slip on the last step, while holding his auntie’s hand and he was in tears.

We know David’s cry for pain pretty well. One of my nightly dad-rituals is to put the boys to bed. I enjoy spending the last few minutes of the day with the kids—reading, talking with Matthias about life, a moment to tell them I love them and am proud of them (something I think dads should tell their kids regularly and often). After I put the boys to bed, I often sit with David, patting his tummy when he has major reflux and gas pain. He has a distinct “My tummy hurts and I don’t know what to do” cry. I know his cry that comes from pain.

David in the ER

Once we saw swelling on his foot, we took him to the ER just to be on the safe side. David can’t talk, so knowing what he’s feeling can be a challenge at times. We weren’t sure whether it was a sprain or a break, so off we went, middle of the night, for X-rays.

David’s Foot X-Ray

That was the night I learned about the FLACC Pain Scale. Here’s the official explanation:

The Face, Legs, Activity, Cry, Consolability scale or FLACC scale is a measurement used to assess pain for children between the ages of 2 months and 7 years or individuals that are unable to communicate their pain. The scale is scored in a range of 0–10 with 0 representing no pain. The scale has five criteria, which are each assigned a score of 0, 1 or 2.

I don’t know why we hadn’t heard of this in 11 years of caring for David, but there is was on the wall of David’s room in the ER. Being bored, I read. I took in what it said.

“Lisa, check this out. I just read this pain scale for kids who can’t talk. Listen to this and see if it

sounds like David when his tummy hurts sometimes,” I said. “‘Face, Frequent to constant quivering chin, clenched jaw.’”

“Yea, David clenches up his face like that a lot.” Lisa said.

“‘Legs—Kicking,’” or listen to this, “‘legs drawn up.’ Doesn’t that sound like David?” I asked.

“It does.” Lisa answered.

“OK, check this out, ‘Activity—Arched, rigid or jerking.” I read.

“Whoa. They have arching on there?” Lisa said.

“I know. And listen to this. Cry, Crying steadily, screams or sobs.’ And ‘Consolability—Difficult to console or comfort.’ That’s totally David.” I said.

“That’s totally David,” Lisa agreed.

“That’s ten out of ten on this scale.” I told her.

It’s one thing to experience your child’s pain. It’s another to read an objective scale that uses the same words you’ve used a thousand times to describe your child’s pain. Drawing up his legs, arched and rigid, screaming and sobbing. These are our words, spoken inside our home. There they were on the chart.

But you also have to understand. This is just the way it is for us. We don’t think about it. Honestly there’s times we feel annoyed instead of compassionate. I’m not trying to sound like a monster, I just want to be clear that we’re not saints either. It’s real life.

What I do think about when David is sobbing in my arms during our post-put-the-kids-in-bed ritual is our relationship as father and son. I hold him tight (he’s STRONG for being so little!) to help him regain control of himself and I pat his tummy. Sometimes, he’ll grab my hand and motion for me to do it. After medication, time, and pats, he calms down again.

The last thing I do is wipe the tears from his eyes.

One of the most beautiful verses in the Bible points the kind of Father God is. Becoming a dad and understanding David’s pain has put the verse into living color for me. The Bible says, “He 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 21:4)

This is the world we live in. Today there is pain. Not just for David, but for me and for you, those we love, and those we don’t even know. I don’t always understand the pain. Sometimes it seems like God doesn’t notice and isn’t doing anything about it. Then we read that God’s story—and thus the story of the world—will include a day where there’s no “mourning, nor crying, nor pain anymore, for the former things have passed away.” And God wipes the tears from our eyes. That’s what God is doing. That’s the true story of the world. That’s who God is.

The last thing He will do is wipe the tears from our eyes.

Waiting

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What do you do when you have to wait? Our son Matthias has grown up waiting. When your brother has special needs, it’s part of the package.

Matthias has grown up in a story that is inextricably linked to his brother. He has spend too many hours in doctor’s offices waiting for David’s appointments. Waiting with us for results. Waiting to proceed to the next waiting room. He’s listened patiently to the story of David’s birth and the way that has shaped Lisa and I over and over again.

In spite of the waiting—maybe because of it—Matthias lives a life that redeems time.

He is an artist. He’s drawn for as long as I can remember. He spends so many of the hours waiting coming up with ideas and drawing. He’s the first in our family to publish a book. OK, it was self-published, but still!

A couple years ago he decided to make a book for Lisa for Mother’s Day. He created a Superhero A-Z book. For each letter of the alphabet, there are three superheroes. Drawn. Colored. Named. Original superheroes. Each has their own backstory. I remember him working on it in waiting rooms and hospital cafeterias. He had nights sitting awake in bed working to meet his deadline.

“Dad, I’m really worried that I won’t finish in time. I have so much work to do to finish for mom.” He told me night after night as I put him to bed.

“It’s OK kiddo. just keep working on it a little at a time. I think mom will understand if you don’t quite make it.” I said. (His first big project and I was already teaching him to blow off deadlines! What a terrible father!)

Matthias turns 10 today. He is creative. He is imaginative. He is dedicated to his art. He thinks, he draws, he writes. Every day. Everywhere we go, he’s got his bag with paper, pencils and pens at the ready just in case he has to wait—he’s ready. He is loving. His book for Lisa was a work of love. He loves his brother—even looking for him at school (they inhabit afferent parts of campus), and being protective of him with other kids. He is sensitive. He cares about the people in his life. He is kind and respectful and knows how to talk with adults.

I am proud that Matthias is my son. I celebrate his step into double digits toward the pre-teen years even as I grieve the loss of our little boy. I can’t wait to see the man he will become. Happy birthday Matthias.

How to Face Adversity and Find Joy (Sort of)

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“How do you do it all? I can’t imagine what it must be like to have a child with special needs.” People say things like this to Lisa and I a lot. Having a child with special needs—our son David has Cornelia de Lange Syndrome—has taught me a lot about myself and the world. The truth is, I “do it” through a fair amount of complaining. I’m a complainer.

I used to think that when Lisa tells me not to complain, she’s just being Pollyanna about the world. I grew up with a British mom, around British adopted family, and have always loved spending time with my British relatives. One of our favorite pastimes is what my cousin calls “moaning.” Actually, he says it’s the British pastime—like baseball in the U.S. This is one reason I feel like I’m with my people when I visit England.

Most of my friends (when I say ‘most’ you should read ‘all,’ I just say ‘most’ because that sounds more credible—you’re not supposed to use allness statements) have confronted me about my complaining. I remember as a freshman at Biola University going across the street to play Frisbee golf. I was hot, stressed out and annoyed. I guess I didn’t keep it to myself because my buddies taunted me singing “I have joy, joy, joy, joy down in my heart!” It did not make me feel joy.

There was also the youth leader when I was in high school. It was day 4 of my first Mexico mission trip. He was always upbeat and encouraging—I liked that about him. One day I was going on about how tired I was and I didn’t think it was fair that another team got showers and we didn’t. He just looked at me and said, “Steve, can you just STOP complaining for five minutes!?” (I think that was the first time someone called me out for complaining.)

Then there was my college girlfriend I wanted to marry. She broke up with me because I complain too much. She spent one miserable Fourth of July with me and my family and that was it. “Those fireworks were awful.” “Those people don’t know what they’re doing.” “And there were so many people.” It was bad enough to hear me do it, but hearing that I’m from a family of complainers made her see the problem was systemic. That was that.

None of that was enough for me though. All that happened years before the Sting concert I attended with my wife Lisa, her sister and my brother-in-law. From my perspective we were too far back from the stage (I’ve “seen” Sting in concert, but he was the size of an ant. They realistically could have put any guy on the stage and just played his CD’s.), the seating was uncomfortable, the food was no good, and I got to such a bad place I couldn’t pull myself out of it.

“Why can’t you just make the best of it and have fun?” Lisa asked.

“That’s totally bogus! You know it sucks. Why can’t you just say so?” I replied.

“Why do you have to be so miserable and ruin it for everyone else?” She asked again.

“What do you want me to do? LIE?! When something sucks, you say it. That’s part of it.” I said.

It’s fair to say I didn’t make myself popular as a brother-in-law that night. Or as a husband. No one was very happy with me and I just went away smugly justified that I was the only one who could see we got ripped off. I still didn’t get it.

Here’s the thing. No one likes a complainer. Not even the complainer himself. As I think about the years Lisa has put up with me and my complaining, I can’t believe she’s still married to me.

It’s funny, but this is one area of my life the Lord has confronted over the years through having a child with Cornelia de Lange Syndrome. David has CdLS. It’s not going away. It sucks. There are times, days even, when I feel ripped off. When I feel he’s been ripped off. When I feel Matthias has been ripped off. When I feel like Lisa has been robbed. Sometimes I feel like I’m going to lose it if I hear David scream any longer with GI issues. But CdLS isn’t going away. It’s not the way it’s supposed to be, but it’s the way it is. The only thing we can do in the midst of it is do our best to dignify and love David. We have to soak up his precious smile, his rolling belly laugh when he gets silly. We have to celebrate seeing him intentionally dribble a soccer ball while holding my hand. We rejoice at things like bowel movements because it means everything’s working and he’ll have a better day.

These moments point to the brokenness of the world. There’s a lot to complain about. God made the world one way, but we’ve made it another. (I always puzzle at people puzzling at “How could a loving God let bad things happen?” As if God screws up the world instead of us!) But God is redeeming and restoring the world through his son. One day, we’ll be able to listen to concerts close to the performer. The food will be great. One day the fireworks will be fantastic and we’ll have great seats for that too. One day David won’t have CdLS and his tummy won’t hurt anymore. We’ll talk with our son in a way we can’t now.

If that’s the story we live in, why not make the best of it now?

What Would You Tell Your 20-Year-Old Self?

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Stephen Leonard in 1997

I recently joined a gym and as part of the intake one of the guys asked me, “Stephen, what would you tell your 20-year-old self?” His question made me reflect on 20-year-old Stephen. “What would I want him know—in college, trying to figure out how he’ll live in the world?”

Then it came to me, “Take more risks. I would tell 20-year-old Stephen to take more risks.”

I think back on classes I thought about taking but didn’t. The semester in the U.K. that I always wanted to do, but “couldn’t ever afford.” The girl I wanted to date, but couldn’t risk being rejected. The job I wanted, for which I never applied.

Hockey player Wayne Gretzky said, “You miss 100 percent of the shots you never take.”

How often have you missed out on an opportunity in life, not because you failed, or lacked the skill, or got beat out by someone more qualified, but because you never tried? In my life that’s true more often than I would like to admit.

I don’t want to be laughed at. I don’t want to be criticized. I can tell you every objection to every risk I take. Whether big or small, there’s always a reason to hold back, play it safe, and avoid finding out what I’m really and truly capable of doing.

But I also know risk works. That’s how I met and married my wife. That’s how Lisa and I built our business to the point I could leave my day job. That’s how we help the people who stare understand David and respect people with special needs. That’s how I got fired from one job to get a much better one.

Here’s the thing about avoiding risk—it’s impossible. Safety is an illusion. Life is risky. People are killed in automobile accidents everyday. I know an athletic and otherwise healthy 22-year-old who suddenly died days before college graduation. I’ve seen people in the intensive care unit for heart problems caused by stress. I’ve seen leaders endure criticism, failure, and loss as a result of avoiding risky decisions that they believed in. I’ve spoken with people in their late 80’s who characterize their lives with regret because they avoided the risk of the path they really wanted to follow.

Yes, we need to be responsible in our risk. Start small. Write a blog. Take that trip you’ve always to take. Volunteer your time in a cause you care about. Invite those people for dinner you’ve been wanting to get to know.

If I were to give my 20-year-old self advice, that’s what I would tell him. Risk more. Risk in the little things to gain practice. Learn from failures in risk. And risk again.

I’d love to hear from you. What Would You Tell Your 20-Year-Old Self?

I’m Not Righteous

Changing Diapers Matters

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I 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?