We held out for healing. We prayed for it. We laid our hands on his head. We called out for God’s kingdom to come on earth, in Zeke, as it is in heaven. But the healing we wanted never came, and finally, after far too long, Zeke took his last breath at 3:00 this morning, passing from life to death, and on into eternal life.

“Where, O death, is your victory?

Where, O death, is your sting?”

Zeke is with Jesus. I’m jealous of them both.

I’m jealous of Zeke because he gets to rest from all of his trials. He gets to see what I can only hope for. He gets to know Jesus face-to-face. He is made whole, today, in the presence of his Savior and Creator.

I’m jealous of Jesus because he gets to talk to Zeke. Because of this disease, I was never able to have a real conversation with him. He could only respond nonverbally because the speech function in his brain was not allowed to develop. But now that he’s made whole, the first person he ever gets to converse with is Jesus. So I’m jealous.

On this mountain the Lord Almighty will prepare

a feast of rich food for all peoples,

a banquet of aged wine—

the best of meats and the finest of wines.

On this mountain he will destroy

the shroud that enfolds all peoples,

the sheet that covers all nations;

he will swallow up death forever.

The Sovereign Lord will wipe away the tears

from all faces;

he will remove his people’s disgrace

from all the earth.

The Lord has spoken.

Our hope is built upon the resurrection of Jesus. We don’t imagine that Zeke is whole or that we will see him again because we are looking for ways to comfort ourselves. Rather, we comfort ourselves in the historical fact of Jesus’s resurrection and what that means about the future for all who believe in him.

Zeke’s bed is empty, and I feel that same emptiness in my heart. All of the pillows and blankets that protected his flailing feet and arms from hitting the bedrails are still there, but his body is conspicuously absent. My heart is wrung dry. My stomach is churning.

For half of his life he suffered from the effects of seizures. Now, for eternity, his body is made new, never to seize again. I rejoice that his suffering is over. I lament that he is gone.

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My sweet boy, the next time I see you we must have a long chat.

I love you.

I rejoice with you.

You are missed.

I will never forget you.

Our four-year-old son Zekey has a fatal neurological disorder called Batten Disease, which has stolen all of his motor skills, including his ability to speak. There is no cure for Batten, so we don’t know how much longer we have with him. Because he can’t talk to us, there is so much that we miss out on. One of the hardest, for me, is that I don’t get to experience his imagination, especially as it comes out through his dreams. What his mind does while he sleeps is a distant mystery to me.

This post is my imaginative attempt to enter into Zekey’s dreams. He is the one telling the dream. He is the I in the story.

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I was lying in my bed when I heard Cyrus lugging up a big box from the basement. He was grunting and groaning as he lifted it, step by step, up the stairs. I couldn’t see him around the wall, but I could tell by the noise that he was bringing his box of Legos up the stairs.

The door squeaked open and his head popped around the corner. “Hi Zekey,” said Cyrus. He was really excited. He pushed his heavy box across the carpet right up to my bed. I smiled wide. I was so happy that my big brother was going to play with me!

“Do you want to play with Legos?” Cyrus asked. Playing with Legos with Cyrus sounded like so much fun! I laughed long and loud.

Cyrus grabbed a handful of Legos and climbed into my bed. “What do you think we should make? I think we should make a tower all the way to the roof!” Wow! A tower to the roof. This would be so great!

Cyrus got busy stacking the Legos all around me. He even let me hold some. I tried to help but my hands were too shaky. That made me very sad. I wanted to play!

My big brother saw that I was upset and that my hands were shaking too hard to help. He grabbed my hands, smiled, and said, “It’s okay, buddy. I can build it for both of us.”

The walls were getting really tall. They were almost to the ceiling! Cyrus started building ledges for me to lay on so that I could be close to him while he built. We finally made it all the way up to the ceiling, but I was confused. How were we supposed to make it onto the roof? I looked back down at my bed, and it seemed really far away. I was scared. Cyrus could tell.

“You don’t have to be scared, Zekey. I’ll hold you.” Then Cyrus put one arm around me and started to build a door on the ceiling. When he was finished he opened it up and pulled me out onto the roof. There was a great big Lego chair waiting for us out there!

“I built this while you were sleeping last night,” said Cyrus. “I wanted it to be a surprise.” It was.

It had taken Cyrus all day to build the Lego tower to the roof, and now the sun was starting to go down behind the trees. The wind was warm on our faces. We sat up there for a long time, watching the sun set. Then he gave me a big hug and whispered in my ear, “You’re my brother.”

The first month of the Year of No has come and gone. It went pretty well for me. The idea of self-denial has been at the front of my mind all month, and I’ve learned a lot about myself in the process. You see just how dependent you are on something when you start to remove it from your life. On the other hand, you also see that you can survive without it, not to mention that life can actually be richer and fuller without it.

The Year of No is all about overcoming entitlement and resisting indulgence. It is, in theological terms, a spiritual war against idolatry waged in daily skirmishes of temptation and self-denial. But gods are powerful things, and they take root deep within our hearts. I found this to be true when it comes to the idol of food.

My first entitlement, as described in this post, is Eating whatever I want, including eating out and drinking Coke too much. Food-indulgence is a growth area for me, and I didn’t expect to master it in just one month. The next step for me is doing a better job of planning ahead for work days. Getting the kids up and out of the house for school can be a whirlwind, and I get so focused on the immediate task that I don’t stop to think about packing a lunch. Planning is a discipline that I can add into my life that will bear a lot of fruit.

One of my other entitlements is Binging on entertainment, and I discovered The Walking Dead this month, so that one was pretty much a failure! Actually, that’s not entirely true. I was able to read three books in January and post reviews for all of them, as well as write a little bit of my book.

Overall, I’d say my biggest opportunity for growth is the same as it was on January 1. I allow too much room for indulgence and entitlement in my life. Even as I write this my mind is thinking of ways I can justify getting Chipotle for lunch and watching an episode of The Walking Dead before I have to leave for a meeting. It’s your day off, after all. You’ve already had to go to the dentist, and soon you’ll have to go to a meeting! You deserve a treat. This is where and when I have to find the resolve to say, “No!” Life is more than food, and the mind is more than entertainment.

Have you ever seen a vague mile marker on the side of the highway? Mile 102ish, or maybe 108. I don’t know, I haven’t been paying attention. No, you haven’t. Mile markers are always specific because vague markers don’t show you the way forward. The way forward for me is marked out in specifics. Planning ahead for meals while at work. Reading the Bible before engaging with social media in the morning. A specific number of pages read per day instead of an entertainment binge. The vision of becoming the man God wants me to be is realized by taking specific steps of self-discipline and self-denial.

It’s that way for all of us. Nobody just falls into Christlike character by accident. It takes hard work, focus, and self-discipline to get there. You have to be specific. If you haven’t named your entitlements yet, do that. Be specific. Be honest. Be ruthless with yourself. And then outline an equally honest and specific way forward. But remember, this is accomplished in steps, not in one giant leap. The art of discipleship is learning to put one foot in front of the other, following Jesus along the way. The Year of No is a journey within the greater journey of your discipleship with Jesus. It’s meant to help you name and overcome your idols through the long, slow act of self-discipline. But for discipline to take, it must be specific.

We’re wrapping up the first week of the New Year, as well as the first week of the Year of No. It’s been a pretty good week for me, as far as saying “No” to my entitlements goes. I started off by naming my entitlements and indulgences, which has helped me to stay focused on what I’m saying “No” to, as well as to provide perspective about how often I’m saying “No” and why. If you haven’t taken the time to sit down and name your entitlements and indulgences, I highly recommend you do so. Clarity is the first step toward victory.

As far as my entitlements go, I haven’t eaten out except for work or family events. I’ve forced myself to find food around the house, or to eat something before I leave for work at night so that I won’t be tempted to stop at Wendy’s or Chipotle. My pop consumption is less than half of what it was last year. The other temptations that I face occur less frequently, but the concept of the Year of No has been at the front of my mind, so I’ve been intentional about taking ground on those issues, too. 

Like many of you, we are snowed in today. Many of us treat days like this as special, like a birthday or a holiday. This means that we might allow ourselves to indulge in certain pleasures that we may not otherwise. We give ourselves permission to indulge because we believe that these indulgences are what make special days so special. But the danger of indulging is not in what it means for today, but what it could mean for tomorrow, and the next day, and the next. Saying “Yes” to our indulgences and entitlements today makes us far more likely to say “Yes” to them tomorrow, which makes it more likely we say “Yes” the next day, and so on.

The other thing that can happen on snow days is we can go a little stir crazy. Our kids have been out of school for almost three full weeks now, and because of the weather here in the Midwest we’re all stuck indoors. Together. Tensions can run high. You might be tempted to yell or lash out. You might be tempted to grab your phone and lock yourself in the bathroom for an hour. Days like today are the ones when my resolve is most tested. What can we do to overcome the temptations of these “special” days?

Titus 2:11-12 says, “For the grace of God has appeared that offers salvation to all people. It teaches us to say “No” to ungodliness and worldly passions, and to live self-controlled, upright and godly lives in this present age.” God’s grace teaches us to say “No.” If you’re snowed-in at home today and tempted to indulge, remember that it’s not clenching your fists and gritting your teeth that helps you say “No,” it’s the grace of God. God has grace for you today to say “No” to the ungodliness of your indulgence and entitlement and to say “Yes” to self-control. When you’re tempted today, ask God for grace.

Self-discipline requires both grace and vigilance. We can’t do this on our own, but through the grace of God we can do this. We can become more like Jesus by making these small decisions toward self-discipline. God gives us the power to make these choices in his grace. But we must be vigilant. Character development doesn’t happen on accident. When we allow things to get out of balance today, our starting point for tomorrow is that same out-of-balance point. In other words, we lose hard-fought ground when we indulge ourselves. But when we continue on the path of self-discipline, we gain a great victory because we have overcome the tiny temptations that beset us each day, and on the sort of day when we are most likely to indulge ourselves.

Many of us have formed habits of permissiveness that manifest themselves in times of stress, or on special days when we just want to relax and take a break. We have rationalized our indulgence. 

I’m going to smoke this cigarette because work was really stressful today.

The kids are home from school so we’re just going to lay around, watch movies, and eat cookies all day.

The little ones are finally asleep and now I’m going to binge on social media for the next two hours.

Special days call for special grace. Instead of permissiveness, focus on what God has set you free to do and become. You don’t have to be enslaved by the old temptations anymore. There is grace for you, and in that grace there is great power. Use the time you have to form new habits rather than fall back into old ones. Special days are unique opportunities to become the new you!

There has been a pretty great response to the Year of No so far. Lots of folks have been sharing on Facebook and Twitter with the hashtag #yearofno. I’m really excited about what God might do in the lives of folks who begin to say “No” to their daily entitlements and indulgences. Small acts of self-denial make room for larger works of God’s kingdom. Denying yourself always leads to finding life. 

The first step of self-denial is naming the things to which you feel entitled or in which you indulge. As I said in the Year of No introductory post, “clarity is the first step toward victory.” We can only overcome that which we clearly and continually name.

Most of the things that we are naming here are not bad things (though some of them could be). They are little things that we feel entitled to throughout the day. They are things that have gotten out of balance in our hearts. They have become too important – so important that we think we deserve them or need them to be content. I’ve decided to post mine online. If you’re having trouble identifying some of your entitlements, maybe reading mine will kickstart your thinking.

As things with Zeke spiraled downward and the chaos of our lives escalated, eating out became normative. At first it was an act of desperation and exhaustion, but soon it became the one opportunity I had to experience daily pleasure. It soon formed into a habit and an expectation, and now it’s time to break it. I’m concerned that I’m reaching a critical point in my physical health, so it’s time to start saying “No” to eating out and drinking pop all the time.

I want to return to a time when eating out and enjoying finer foods was an act of celebration rather than an everyday occurrence. I want to be a healthier man for my wife and kids. This, I’ve found, is one of the toughest fights I’ll face this year. The stomach (and tastebuds) is a powerful force, one that is not so easily denied. The temptation will come in manipulative forms: You didn’t drink a Coke for lunch, but you can have one as a snack. You’ve denied yourself long enough, it’s time to enjoy a treat. No!

2. Remaining relationally and emotionally distant.

I’m an introvert, so I tend toward being relationally distant as it is. I enjoy the world of ideas more than, you know, interacting with other humans. But as a pastor, my introversion is one of the main detractors from my ability to minister to others. I’ll never be the outgoing type, but I need to push myself toward being more engaged with the people that God has brought into my life. Saying “No” to my right, as an introvert, to be withdrawn and relationally aloof is important for my character development this year.

3. Binging on Entertainment

My Meyers-Briggs personality type is INTJ, and one of the things that INTJs do when they’re “in the grip” (meaning, when they’re under stress) is binge on entertainment. For me, this comes out in Netflix binges or engrossing myself in a video game. On days like today (New Year’s Day), I’ll lay on the couch and watch football for ten hours straight. (Or I would have before I had kids.) In the midst of the binge, the troubles and stressors are forgotten. By engulfing myself in entertainment, I enter into a false reality, and all false realities cut me off from my true self.

Stress is a part of my life. It’s difficult to avoid stress when one of your children is slowly dying. Being “in the grip” has become the new normal. But binging on entertainment, which is essentially disengaging from reality, does not help me to develop the kind of character God is busy forming within me. To partner with God in my own character formation, I need to learn to say “No” to the entertainment binges in which I try to escape.

4. Sleeping In

This is a tough one because Breena and I both have to get up multiple times each night to care for Zeke. It’s been a long time since either of us have gotten a decent night’s sleep, so you can understand how it can be tempting to sleep in every day. The problem is that we have three other kids, and all of them like to get up pretty early. They need to be cared for, and we can’t effectively do that while sleeping in our bed. (Curse you space-time continuum!) I can’t be the dad they need from my bed, so getting up and getting the day started is vital, both for myself and for my kids.

I hope that by naming my entitlements you’ll be able to be more aware of, and be able to give names to, the small things you feel entitled to, or indulge in, as you go about your day. Remember, the Year of No is not about saying “No” to something forever; it’s about saying “No” to an entitlement right now so that you can say “Yes” to something better and more important.