Surprised By Grief

I wrote some of this from Iceland, where we unexpectedly spent a couple days after I passed out on a plane. More on that later. I started writing this in the USA. I am now finishing it in Antwerp, Belgium.

I have been surprised by grief. Not surprised that I have experienced grief, but surprised at the forms it has taken.

It has been a month since I watched my son Peter take his last breaths. The memory still makes me shudder. The moment Peter stopped breathing I began howling. The horror of my grief came tearing out of me, cycling through every octave in my vocal range. This was nothing like what you see in movies. This was the pain of my soul facing the incomprehensible fact that my son, from one moment to the next, was gone forever. If there were people in the adjacent rooms, they heard me wailing. This howling did not surprise me. I had felt it in me. I knew it would come. What does surprise me is that I have never heard anyone talk about it. Our grieving in America takes place predominantly in private; so I have walked with people through their grief, but had never seen behind the curtain. I share this so that others will know what grief can look like.

Coincidentally, after I wrote the above, I heard part of an interview with an anthropologist on the National Public Radio show Invisibilia. Renato Rosaldo and his wife Shelly lived among the Ilongot people, a remote tribe of the Philippines known for headhunting; that is, they decapitated people. Renato worked hard to understand their emotional world. Every word he learned had its equivalent in Engligh, except one: Liget. He thought at first that it had to do with energy and productiveness. “But then liget exploded out of that definition into an emotional landscape he had never before encountered.” (The article is here and the podcast is here). When he played back an audio recording of a loved and respected tribal member who had recently died, the room went silent and the faces of the men gathered showed rage. It made them feel liget, they said. “It makes us want to take a head, they told him, over and over. It makes us want to take a man’s head and throw it.”

The anthropologist Renato was astonished at this emotion they expressed. He had no category for it. Until, some years later, in another part of the Philippines, his wife fell to her death. After the funeral, an emotion which began when he looked at his wife’s broken body continued to grow. One day, while driving, he felt its pressure growing inside him. He pulled to the side of the road. If I had thought of it when writing about my grief at Peter’s death, I would have described it as in the article: “a howl came roaring out of him.” In that moment Renato knew, this is liget, the terrifying emotion he had observed as an anthropologist. The closes he could come to describing it in English was “high voltage.” When I heard this, I thought, “That’s what I felt.” The desire to behead someone in response remains foreign to me, although I can understand how the roaring could turn to rage. Burying one’s grief by causing it in another seems unhealthy, to say the least. But American ways of dealing with death seem unhealthy as well.

When Peter died, I felt like my howling would never stop. But grief is surprising; eventually I calmed down. The moment we met our kids at home it all began again, although at less volume. Crying with children can’t last forever. Our daughter asked me suddenly, “Why does it sound like you’re laughing sometimes when you’re crying?” And after we had all cried together on the bed for some time our six-year-old said, “I’m hungry.”

The next surprise was how good I felt. I cried often the next few days, but not as much as I expected. We scheduled the funeral for just four days later. It felt better to have the service sooner rather than later so that it was more connected to the event of Peter’s death. I cried during the service, but made it through the sermon without tears, much to my surprise. We actually enjoyed dinner with family after the service – at the restaurant that hosted Peter’s Make-A-Wish event. I told people in those days that we were doing remarkably well. We felt lifted up by everyone’s prayers. We missed Peter terribly and cried for him often. But we also felt amazingly well at the same time. Sometimes when I found myself thinking about something other than Peter I felt like I was betraying him. I felt I should be sadder. I should think about him without ceasing. I was surprised at how light I felt. We planned a trip to Belgium in early June to visit and check out schools for our kids. We put in our 30 day notice on our rental house. These felt like the right things to do. I thought we might need more time to recover, but we felt ready to move on.

The next surprise of grief was the physical symptoms that sprang on me without warning. While driving one morning I felt a tightness in my chest. Like a balloon inflated just behind and beneath my sternum – bloated, hollow, uncomfortable. I felt like I wasn’t getting full breaths. My heartbeats felt irregular. These physical symptoms triggered anxiety, which made the symptoms worse. Was I feeling lightheaded? I should pull over. Is there something wrong with my heart? Could I have a tumor in my stomach? Over the next few days I cycled through lack of appetite, fatigue, difficulty sleeping, tingling in my legs, and often that tightness in my chest and strange heartbeat. I found myself holding my stomach muscles tight without realizing it. When I relaxed them, strangely, my stomach felt bloated and I became more aware of my breathing, which never felt quite normal.

My anxiety had me second guessing our decisions about moving out of the house and making a trip to Belgium. My anxiety and fear make me all the more amazed at my son Peter. He faced his diagnosis of cancer, the uncertainty of treatments, and the certainty of his death without anxiety, fear, or complaint. I feel something in my chest and I quake with fear. God grant me the courage of my eleven-year-old child!

Is this what grief feels like? It’s not what I expected. I found an article about how grief causes physical pain for some people. It was reassuring to hear that I am not alone, that what I have felt is not a sickness, but stress. They say that everyone grieves differently. I am sure this is true. Despite being acquainted with many grieving people over the years, I was surprised by the physical symptoms of grief. It wasn’t that I thought about Peter, felt sad, then experienced physical pain. The symptoms came out of nowhere. Despite my mind feeling clear, just below the surface the grief was still rolling. That grief comes to the surface in many ways. Some of the things that make me cry:

  • Looking at one of Peter’s drawings. Seeing his wildly creative personality in them, I wonder what he would have created ten years from now. This one would require interpretation from Peter.
  • Whether he was healthy or sick or dying, they all make me think of what we have lost. No matter the situation, though, he was almost always smiling. Which again makes me think of the great source of joy that is now gone.
  • Memories – of Peter playing in the creek with his sister after a backpacking trip, or sitting next to me on the couch at Easter, or conversing at the dinner table, or just about anything.
  • The suffering of others, whether reading about Jesus’ death in the Gospels or thinking about my father-in-law’s Parkinson’s disease, or thinking of a three-year-old we know with a prognosis as grim as Peter’s. It is good to be sensitized to the suffering of others. I never felt it from the inside before.
  • Watching a middle-aged woman at a worship service break out into a full dance. Why? Because I know she loves the Lord and I do too. I just don’t think I could dance right now, but I’m glad she can.

I am not surprised at what makes me cry but I am sometimes surprised by how long and hard I cry. I find that tears often make me feel better, though. I would take tears of sadness over the strange symptoms that feel like anxiety, or that trigger anxiety. That’s what has really surprised me in my grieving. I expected sadness, depression, not physical problems and feelings of anxiety. I realize that I am not always very in touch with my emotions. The advantage is that I am not incapacitated by grief. The disadvantage is that the grief builds until it forces its way out. So now I set aside time to think about Peter, to grieve on purpose. Writing in a journal helps. Writing for others, as I do here, helps too. I hope that it may help someone else in their grieving too.

In the midst of my anxiety, when I feel that balloon inflating in my chest, I talk with Rebecca, cry, and feel the confidence, “We’re going to be okay.” God has seen us through a lot. I have had one major long-term battle with anxiety/depression/a dark night of the soul before. As God did before, he will bring us all through this present grief, and me through the anxiety that has come with it. Even in the middle of it I know deep down, in the words of the Psalm that carried me through the last six months: “I remain confident of this; I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord” (Psalm 27:13-14). We received a card from a family a few days ago with that verse written in it. It came as a reminder from God.

So what happened in Iceland? We flew all night from San Francisco to Reykjavik. None of us slept. We all require a horizontal position for sleep, unlike the happy family of four behind us that slept through the entire ten hour flight. At the end of the flight our oldest son had just fallen asleep, but I had to wake him up during the descent. “I feel horrible,” he mumbled thhickly. His face was white, his lips had no color. “You need to lay down!” I said, seeing he was about to pass out from sheer exhaustion. We transferred to a plane bound for Amsterdam, which is just a three hour flight. “I don’t know how I’m going to make it through this, dad,” he told me. Anxious about him and my wife and other children, I suddenly began to feel unwell myself. “I’m going to pass out,” I said. Next thing I remember was an awful feeling of confusion, of fighting through the blackness to figure out where I was and what was happening. I was taken to the hospital, where every test came back normal. Of course. All I needed was to lay down and I would recover. It has happened before. It’s called vasovagal syncope and I have a bit of history with it. I can count five times when I have passed out and about the same number of near misses. I actually thought that I might have an episode when Peter’s death came. What I got instead was liget. The buildup of stress pounced on me later, with physical symptoms, anxiety, and surely contributed also to me passing out on a plane. I feel bad for the poor people strapped into their seats unable to escape the vomiting man regaining consciousness on the floor beside them. I will be talking to some doctors about what can be done about vasovagal syncope and anxiety, by the way.

Iceland is a quiet, cold, and beautiful country, despite being nearly treeless. Rebecca had always wanted to visit, just not in these circumstances. I found a lot of lupine on the bluff above the bay.

Now I am sitting in the sun room of our future home in Antwerp, Belgium. (We’re just here visiting. We expect to move later in the summer). My body refuses to sleep on non-California hours, so I have been up since 4:00am. I am already grateful for the expansive wooded park across the street and for this beautiful room. Both will be restful and restoring.

Here, friends, is a window into the soul of a suffering man, a month of grieving. But I am suffering as one who is united with Christ, the man of sorrows. Can I say once more: “I remain confident of this; I will see the goodness of the Lord in the land of the living.”

 

“How Are You?” (and higher quality video w/ slideshow)

First, here is the link to a higher quality video of the memorial service for Peter. The slideshow is also visible on this video, unlike the video on facebook. https://vimeo.com/217748027. Yes, you may share it. We don’t want our son’s death sensationalized, but as I said at the funeral, Peter’s life preached a better sermon than I ever could. Good stories are meant to be told and good sermons are meant to be heard.

 

“How are you?” A lot of people have asked us that, and for good reason: our eleven year old son died nine days ago, after suffering for six months with cancer.

Well, we cry every day. We miss our son. We are tired. We don’t feel like having a lot of visitors. There is a low-grade depression that sometimes seeps in. It still seems unreal that he isn’t with us. The number five feels incomplete. There are constant reminders of his absence. He is always on our minds.

But we are doing remarkably well. We are not incapacitated by grief. We are not hiding. We are not numb. We are grateful for Peter’s life and so, so glad he was unafraid of death. We are confident that he is in God’s presence, which is light, and life, and love, and joy. We can say with confidence that God is good, and he has been good to us. The words of 2 Corinthians 1:5 are very real to us: “For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.” How are we doing – are we suffering, or are we comforted? Yes.

There are a few reasons why I think we are doing so well:

  1. Our grief was spread out over several months. If, back in November, he had been diagnosed and died the next day (which was possible), our experience of grief would have been much different. Instead of a sudden drop, we were lowered down in several stages. That gave us time to prepare ourselves and Peter. We grieved together while he was with us.
  2. Peter’s fearless and uncomplaining attitude gave us strength and confidence. For a kid with a tendency to whine, this was an unexpected gift of God.
  3. We feel the prayers of so many people. I am well aware that not everyone experiences so much comfort in their grief.

 

“What are you doing?”

Our kids are back in school, but there are only two weeks until the end of school. And then the ball that got stuck begins to roll again, and we expect a straight track to Belgium now. I thought we would need a good bit of time to recover enough to be ready for the move, but we are finding that we are eager and ready to go. My work here is complete; the only thing keeping us here was Peter’s illness; a new adventure will be good for us all, so sooner is better than later. So we put in our 30 day notice on our rental house today, we are collecting the documents we need to apply for a visa. When the application is in and we are out of the house, we will spend time with family and friends, we may travel, we will hike, and I will write.

I have a book incubating. I’ll let you know when it breaks out of the shell.

One place we may visit en route to Belgium is a certain spot in Scotland. The first song played in Peter’s slideshow is by the Piano Guys, who film videos of classical and cover songs (often combined) in beautiful locations around the world. This video was filmed at Eilean Donan castle. Peter had decided that this was the place he wanted to go after cancer was behind him. As with many experiences in the future, a visit there will include heavy shades of sadness. We will go and remember our beautiful and beloved son.

 

 

“How are you doing financially?”

So many people have been so generous, and we are so grateful. Our oldest son saw some checks yesterday and I said, “Now you know that there are a lot of people who love us.” I know that is what you wanted to communicate; the message got through. So now you can direct your generosity to another person, another cause. Again, the words of the Apostle Paul have become a reality to us: “It was good of you to share in my troubles…I have received full payment and have more than enough. I am amply supplied” (Philippians 4:14, 18).

If this isn’t clear enough, let me say it another way: Please stop sending money to us. Send it somewhere else. Again, I would direct you to Partners International. Or International Justice Mission. Or World Impact. Or Voice of the Martyrs. Maybe in six months or a year I will have a project with refugees in Antwerp that you can support. But don’t wait for that. There are people who need your help now.

The Funeral

A conversation from Monday, May 8:

“Peter, are you ready to see God face to face?”

“Yes.”

“Are you ready to meet Jesus?”

“Yes.”

Peter Irenaeus Nelson was unafraid to the end, which came at 6:15pm on Tuesday, May 9. He died in the confidence that he would enter the presence of God, where there is fullness of joy. We are grieving, but comforted in the knowledge that he is with our Lord Jesus.

A memorial service will be held for Peter  at 3:00pm on Saturday, May 13, 2017 at Gateway Community Church, 353 E. Donna Dr, Merced, CA 95340. For those unable to attend, a recording of the service will be available online shortly afterwards. As a pastor I preach, but Peter’s life itself was a better sermon that I could ever give, a testimony to the power of the gospel to disarm death itself. Join us in sharing Peter’s story, grieving his tragic loss, trusting in the great love of God, and celebrating the resurrection.

As we are expecting a large number of people at the service, there will not be a time for public sharing. We would like to hear your memories and stories about Peter though, and especially what you might have learned from him (I learned a lot from him). Anything that you would share publicly at a service you can share in the comments here for all to read.

If you are thinking of giving flowers or a gift, Peter would have liked you to give to children with needs in other parts of the world. Peter often prayed for children without access to medical care like he had. Consider giving through Partners International or Unicef.

My Bones Suffer Mortal Agony

Things are difficult. How could it be any different? Suffering and death are things to be endured, not embraced. Instead of expounding on the specifics of what exactly we are facing at the moment, I will just share some verses from the Psalms that give voice to some of the things we are feeling. I find it comforting to know that at least the writers of the Bible were familiar with pain and suffering – and all the emotions that come with them. More than that, Jesus himself knows pain and suffering.

 

Lord, do not rebuke me in your anger
or discipline me in your wrath.
Have mercy on me, Lord, for I am faint;
heal me, Lord, for my bones are in agony.
My soul is in deep anguish.
How long, Lord, how long?

 Psalm 6:1-3, NIV

 

14 My life is poured out like water,
and all my bones are out of joint.
My heart is like wax,
melting within me.
15 My strength has dried up like sunbaked clay.
My tongue sticks to the roof of my mouth.
You have laid me in the dust and left me for dead.

Psalm 22:14-15, New Living Translation

 

My heart is breaking
as I remember how it used to be:
I walked among the crowds of worshipers,
leading a great procession to the house of God,
singing for joy and giving thanks
amid the sound of a great celebration!

 Why am I discouraged?
Why is my heart so sad?
I will put my hope in God!
I will praise him again—
my Savior and my God!

Now I am deeply discouraged,
but I will remember you-

 Psalm 42:4-5, Easy to Read Version

 

I say to God my Rock,
“Why have you forgotten me?
Why must I go about mourning,
oppressed by the enemy?”
10 My bones suffer mortal agony
as my foes taunt me,
saying to me all day long,
“Where is your God?”

 11 Why, my soul, are you downcast?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.

Psalm 42:9-11, NIV

 

Centipede on a Stick

Did you know that in China you’re more likely to find centipede on a stick than a corn dog? (Think about what exactly is in a corn dog before deciding which one you would rather eat!) Peter saw this fact in one of his Weird But True books and decided he would like to try it – along with fried scorpion, exotic fruits, and other unusual and delightful foods. You may have heard of the Make-A-Wish Foundation, which grants wishes to children with a life-threatening illness. A representative met with Peter to discuss his wish. They were thrilled that Peter came up with something entirely unique in the history of Make-A-Wish: to be “an adventurous foodie,” as they put it. At least it wasn’t just another trip to Disneyland. With this wish the Make-A-Wish teams in San Francisco and the Central Valley got to do some searching. And they found insects, sea creatures, enormous eggs. There are pictures below.

On Friday, April 28, I introduced the night with two biblical passages. I can’t help it, I’m a pastor. In Acts 10 the apostle Peter has a vision of a sheet lowered down from heaven filled with all kinds of animals, reptiles, you name it. A voice says, “Get up, Peter. Kill and eat.” For a Jewish person the thought of eating anything non-kosher was not only against religious tradition, but repulsive. Perhaps the way many people think about eating a tarantula, scorpion, or cricket. So Peter tries to take a pass on that offer. But God insists, the point being, “Don’t call anything unclean that I have called clean.” The reference is not only to foods, but to people. Non-Jews are also welcomed into the kingdom of God.

Fittingly, one of the biblical images of the kingdom of God is a feast. So the other passage I referred to is Revelation 19, where it is written, “Blessed are those who are invited to the wedding supper of the Lamb.” The Lamb, of course, is Jesus who died and rose again. The wedding refers to the union of Christ and the church. A wedding supper was the biggest celebration around. Blessed are those who are invited indeed.

What will be served at this wedding supper of the Lamb? Crickets? Scorpion? Tarantula? Ostrich egg? Mealworms? Alligator? Those were all on the menu for Peter’s Make-A-Wish event. The sad reason for our gathering was that, apart from a miracle, Peter is going to be the first to find out what is on the menu in the Lamb’s wedding supper. We are in the depths of sorrow over losing our son, but glad to know that he will be with the Lord, who already died and rose from the dead. Peter will die in Christ and be raised in Christ.

Despite the acknowledgement of the sad reality, the event was full of joy. Kids grossed each other out. Adults politely declined offers of insects. Peter eagerly tried it all. Dried tarantula? Crunch. Scorpion? Gulp. Crayfish? Slurp. Cricket pizza? Yum. Ostrich sliders? Sounds good.

This slideshow requires JavaScript.

The chefs at Bella Luna in Merced did a spectacular job. We had no idea what to expect. They brought out tray after tray of exotic foods.

Oh, I didn’t even mention the fruits: rambutan, jack fruit, durian (famous for being stinky), cherimoya, mamon, dragon fruit.

Dessert included chocolate covered crickets and red velvet cookies with an insect conspicuously poking out from the middle.

This slideshow requires JavaScript.

Did I try it everything? Of course! So did my other two boys. I’m proud of them.

This slideshow requires JavaScript.

Peter traveled in style. The limo even included lasers. Throughout the night he smiled. It was a blessing.

By the way, the exotic feast continues. There was a fake-looking but very real ostrich egg left over. We took it home and made scrambled eggs. There was enough for sixteen people to eat from. And it’s amazing what you can find on Amazon. Earthworm jerky, smoked rattlesnake, goldenberries, and other delights arrived in the mail today.

But there was one thing that nobody could find, the thing that started it all: centipede on a stick. So here’s a call to my Chinese friends – do you know of a place (in Chinatown?) that sells centipede on a stick?

Whatever’s on the menu, here’s to the wedding feast of the crucified and risen one!

 

And how is Peter? That question is difficult to answer. I’ll write more later. But here is a brief multiple choice quiz for you.

Peter is

A. Dying

B. Happy (usually)

C. In pain

D. Busy seeing friends and family

E. Eating weird foods

F. All of the above

 

Peter would tell you that when a question says “all of the above” that it’s always the right answer.

 

Sailing Over the Edge

Yesterday afternoon I finished reading The Voyage of the Dawn Treader to my two younger kids. Everyone was in the room as I read the final chapters, when they sail to the utter East, the end of the world. There the three children from our world and the talking mouse Reepicheep come to a shimmering wall of water standing like a permanent wave. What lies on the other side no one knows; Reepicheep had always pictured it as the edge of a great waterfall. And at the bottom, Aslan’s country. They could actually glimpse Aslan’s country beyond the sunrise, where they saw a range of mountains of unbelievable height. But rather than being covered with ice and snow they were covered with forests and waterfalls as high up as they looked. And the mountains filled all the sky. Reepicheep took his tiny boat and sailed up and over the edge and was never seen in that world again.

I have always found this tantalizing glimpse into the next world thrilling. Doesn’t everyone long for heaven? The more extensive – but certainly not exhaustive – tour of the new heavens and new earth recounted by John in Revelation can be challenging to understand, but I find it even more exciting. As I have written recently, we have been reading those descriptions of the new heavens and the new earth together. They fill us with excitement and joy.

Did I write this already, that when I asked Peter what was most exciting about the vision of the future world in Revelation he said, “Seeing God. Eternal life. Being kings forever.” It does indeed say “they will reign forever and ever” (Revelation 22:5). Isaac added, “Yeah, and no more sadness or fear.” If that isn’t enough for you, it is described as a place of stunning beauty. Thinking about it now makes my soul hurt with longing. The New Jerusalem is that place, it is the people of God, it is the presence of God – those three things.

Our son Peter is sailing towards the edge. Soon he will be seeing God, entering eternal life, and reigning with the King. He will enter the place, join God’s people, and stand in the presence of God.

On Thursday morning Peter had a CT scan. That afternoon we met with the oncologist. When Peter is present the oncologist struggles to give bad news. That bad news, obviously, is this: Peter is going to die. Radiation has shrunk the main tumor in his chest, but already there are other tumors in his lymph nodes in his neck, in the lower part of his torso. There is even a tumor you can see and touch on the right side of his ribs.

We all cried, of course. Peter’s tears upset us. He has hardly cried through this five month journey with cancer. We asked and he said he was sad, but not scared.

After a few minutes Peter looked at his watch and saw that it was time to return to the Family House for their Easter party. That night Peter played games with friends, ate dinner, enjoyed a mango from the two boxes that another resident there brought specially for Peter. At bedtime Rebecca and I cried. Peter gave us each a hug and a smile.

On Friday morning I called the doctor for more information. How long? Weeks to months, he said. On the drive home we stopped at a home that provides end of life care for children. To be blunt, it is a place for kids to be as comfortable as possible when they die. We wanted to see if it would be an option for us. Peter kind of nodded as we left the well-kept five acres.

We told the news to our kids when we came home on Friday. Good Friday. We held each other and cried. After taking some time to absorb the news, we did normal things: finished The Voyage of the Dawn Treader, ate dinner, watched a Nature video. We also did a Good Friday family worship time. The kids took turns reading about the suffering and death of Jesus, we sang and listened to several songs, some of which made the tears flow.

From Come Ye Sinners:

View Him prostrate in the garden;
On the ground your Maker lies;
On the bloody tree behold Him;
Sinner, will this not suffice?

And Tis Midnight and on Olive’s Brow:

‘Tis midnight, and on Olive’s brow
The star is dimmed that lately shone;
‘Tis midnight in the garden now,
The suff’ring Savior prays alone.

‘Tis midnight, and from all removed,
The Savior wrestles lone with fears-
E’en that disciple whom He loved
Heeds not his Master’s grief and tears.

‘Tis midnight, and for other’s guilt
The Man of Sorrows weeps in blood;
Yet He that hath in anguish knelt
Is not forsaken by His God.

‘Tis midnight, and from ether-plains
Is borne the song that angels know
Unheard by mortals are the strains
That sweetly soothe the Savior’s woe.

I was more able to enter the suffering of the Savior because of our own suffering. We talked about the ways in which Jesus suffered: betrayal, mockery, beating, an unjust trial, crucifixion. But before any of that, he already told his disciples “I am overwhelmed with sorrow to the point of death.” I pointed out that as much as Peter has suffered, and as much as he will suffer, he doesn’t have to carry the weight of the world’s sins. He doesn’t even have to carry his own sins. Jesus took them.
At some point on Friday the social worker from the hospital called Rebecca. Peter overheard Rebecca telling that we had visited the children’s home in the morning. “It was really nice,” she said. Peter, laying reading on the couch, suddenly gave a thumbs up and an enthusiastic nod.

“You liked it?” I asked.

“Yeah.”

“So you want to go there?”

“Yeah, but I wouldn’t want to stay there for very long.”

“So just at the end?”

“Yeah.”

Peter is peacefully making decision about where he will die.

On Saturday I woke up sobbing. I am crying now. Partly because of sadness, but then partly because we have such a wonderful child. We are amazed at how he is facing death.

 

After Reepicheep sails over the edge of the world, the children walk through the shallow water until eventually they meet Aslan on the land. He explains that two of them will never come to Narnia again. Instead they must come to know him in their own world, where he has a different name. And from our world the way into Aslan’s country is not over the edge of the sea, but over a river. “But do not fear that,” Aslan says, “for I am the great Bridge Builder.”

To enter the kingdom of God, a person must die and be raised again with a new body. Precisely what we celebrate today, the day of the resurrection of Jesus Christ, the suffering Savior. Peter’s attitude is still “What is there to be afraid of?”

 

Our plans for the day: worship with a local church, eat, dance, laugh. And probably cry. I’m glad we have family in town to do it all with. And in the evening we will head back to San Francisco for one more meeting with the doctors tomorrow, and a little more radiation to keep the tumors under control for a time.

One more thing: I’m sure you will understand if we don’t respond to messages for a while. They are appreciated, so go ahead and send them, but we are occupied with other things for the time.

 

A Good, Normal, Busy Weekend in the Valley of the Shadow of Death

Peter was able to go home on Friday. On Saturday he spent the afternoon playing with friends. We tried out a new game called Keep Talking and Nobody Explodes, in which you use a “Bomb Defusal Manual” to talk someone through disarming a bomb they see on the computer screen. Peter enjoys defusing bombs, but he likes giving the instructions even better. He is good at explaining how to disarm bombs; only occasionally did he let someone blow themselves up. After an afternoon of fun, his friends’ whole family joined us for a great dinner. They even brought exotic fruits to sample, something Peter has been eager to do. Dragonfruit and Kiwano, (aka African Horned Melon) were tasted by all.

Our Sunday was the way I imagine Sundays should be for non-pastor families. For pastors like me, Sundays are a workday – a workday I enjoy, but they are workdays nonetheless. I am now in the situation of missing the activity of being a pastor but enjoying a normal Sunday. We worshipped with the church in Delhi that hosted our church plant, redeemed some In-N-Out coupons the kids earned by reading books, used coupons for a better meal for me and Rebecca at a burrito place, got a treat at Yogolicious, and went for a walk on the campus of the local university. Over yogurt we discussed some ideas from the sermon. On our walk we tossed a Frisbee.

Peter feels that good. Except that while playing Frisbee golf on the campus he complained that his joints hurt. During one throw “they all hurt at the same time” and he ended up on the ground. Sunday evening we had visits from several different friends. It was a good, normal, busy weekend, even despite the fact that Peter has cancer.

The new treatment plan will allow us to return home for the next few weekends. Instead of the planned two weeks of radiation (Monday-Friday) he will now be getting four, but at a lower dosage. So far the only noticeable effects are an occasional cough. We thank God that his throat does not hurt at all. If it did hurt as they predicted – enough to prevent eating – it would have been miserable because he has a raging appetite. It’s like he’s a growing teenager. But actually, it’s steroids. Steroids kill tumors, so he’s back on prednisone for a month as he gets radiation. What a change! He went from desiring nothing to desiring everything, and lots of it. He didn’t eat meat for weeks, but now he’s suddenly putting away steak and sausage. Additional calories leads, of course, to additional weight, but rather than a normal pattern of weight gain these steroids lead to a swollen face and belly. Concurrent with the radiation and steroids is a chemotherapy drug that targets one of the specific mutations that is driving the growth of the tumor. He receives that once a week.

Lining up the lasers

We hope and pray that this combination of therapies works. They need to achieve complete remission in order to move on to the only real possibility of a medical solution, a bone marrow transplant. Instead of using me or Nate as a half match, they have activated a full match, which means the donor will have blood drawn for additional tests.

Weight gain from steroids is a good thing, considering that Peter will probably not feel like eating for several weeks after the transplant. He will be in isolation for a couple weeks. He will be confined to the hospital for a couple months. Hygiene will be of utmost importance. He will have the immune system of an infant, making him extremely susceptible to colds and other common sicknesses for the first few years. The process will most likely make it impossible for him to have children in the future. We asked the bone marrow transplant doctor, “What is the likelihood that a bone marrow transplant will lead to a person being disease free in five or ten years?” Around fifty percent, she answered. Not good odds, but better than nothing.

We talk matter-of-factly about Peter’s cancer and possible death. We take our cue on this from the Apostle Paul, who wrote from prison to the new believers in Christ in Philippi. Paul knew that his imprisonment would lead to one of two outcomes: he could be released or he could be executed. Paul’s attitude toward death is clear as he considers which he would prefer:  “Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body.” Paul’s personal desire was to depart and be with Christ. Death held no fear for him. How different this attitude is from all the avoidance and denial we see. And yet Paul recognized that his continued life would be better for them. We likewise feel that Peter’s continued life would be good for us.

So Monday morning while doing a Bible study on the picture of the future in Revelation 21, I asked what God’s servant John might have felt when the Spirit took him “to a mountain great and high, and showed me the Holy City, Jerusalem, coming down out of heaven from God. It shone with the glory of God, and its brilliance was like that of a very precious jewel.” The boys agreed that he would feel both happy and sad: happy to see it and sad that he couldn’t stay. Isaac combined the words and said he felt shappy.

So then I made it personal and said to Peter, “We know that you might die from cancer.”

He nodded. “If you get there before us, how will you feel?”

He described his feelings and then I asked, “And how would we feel if that happened?”

He gave his own twist on their newly coined word: “Shad,” he said. “Sad that I’m not with you but happy that I’m there.”

“That’s exactly it,” I said, “Although I think we would feel the sadness stronger. But when we join you there…”

“Then it will be happy.” And God will wipe every tear from our eyes, for there will be no more death or mourning or crying or pain. There are a few tears for us to wipe away right now.

So that is how we live and how we talk in the valley of the shadow of death.

 

I will fear no evil, for you are with me.

Radiation & Resurrection

After a couple high doses of radiation and a few days on steroids, the tumor in Peter’s chest had shrunk by a third. His chest was visibly smaller and the blue veins radiating out from the bulge were much less visible. The topography of his chest had changed so much that the lasers that align the machine to the marks on his chest (made with the high-tech medical instrument known as a DecoColor pen) no longer lined up right. They had to do another CT scan and recalibrate the machine that delivers the radiation. The radiation oncologist decided to lower the dose of radiation to something gentler, in the hopes of producing less pain in his esophagus in the short term and less damage to his heart and lungs in the long term.

After a few days in intensive care, Peter was able to return to the oncology unit. A day later they discharged him to stay at the Family House and do radiation as an outpatient. This weekend we expect to return home. He will be back for radiation each day next week.

This is all good news.

But.

We have been in this place twice before, where the tumor responds so well to treatment, then stops completely. So as I wrote before, we are still hoping for healing, but preparing Peter for heaven. Our approach has been to hide nothing from Peter. He knows all we know. We talk openly about the possibility of death.

Never have I been so grateful for the central article of faith, “I believe in the resurrection of the dead.” The prophet Hosea said it and the Apostle Paul repeated it at the end of a section of writing on the resurrection (1 Corinthians 15): “Where O death, is your victory? Where, O death, is your sting?” Death still brings terrible sadness, but it doesn’t terrify. Because it isn’t the end. In fact, for those who belong to Christ, death is the entrance into his presence. The previous verse quotes Isaiah, “Death has been swallowed up in victory?” And a well-known passage in Romans 8 says that nothing in all creation, neither death nor life, can separate us from the love can separate us from the love of God that is in Christ Jesus our Lord. “We are more than conquerors through him who loved us.” I find it thrilling the way victory over death is combined with the love of God in these verses. So death is the entrance into the presence of the love of God.

The gospel gives confidence and hope. This confidence has allowed us to have open conversations with our son about the possibility of dying, and dying soon. Look, even if Peter is healed completely and miraculously, he still needs the resurrection because someday he will die. Healing is temporary, pointing us to the eternal reality of the kingdom of God, in which there will be no more death or dying, pain or sorrow.

There are other families whose children have been sent to hospice care, meaning there is no possibility for further treatment. Their child is going to die. Some parents choose not to tell their son or daughter that they are going to die. The confidence that comes from the resurrection lets us talk openly about life and death. Because “Where, O death, is your sting?”

Other people are unable to accept the fact that Peter might die. They insist that we just need to have faith. That we need to keep hoping. We do have faith! We do have hope! Strong enough to face death. Isn’t this a great part of what Jesus modeled and taught? Jesus came not only to heal, but to conquer death itself. Our desire, of course, is for our son to live many healthy years, but we have no guarantee of that.

In the past few months I have faced greater fear than ever before. And that fear created more fear. I have wrestled with doubts. There were weeks in a row where I felt like all I could do was simply exist, not do. I have cried a fountain of tears. I have prayed desperate prayers. I have waded through waters of grief and sorrow.

What I feel now, surprisingly, is confidence in the love of God. And with that comes peace. As I prayed and meditated yesterday my heart surged with love for God. This feeling may be a temporary respite before the next onslaught, but I am grateful for it even so. I fully expect to face more pain, especially if Peter declines towards death. It is not going to be comfortable to watch. But I expect this confidence in the love of God will continue even then. Or at least it will return.

Where does this confidence come from? It comes from the resurrection, of course. But I feel I have received this confidence in the love of God and the victory over death in a small part through the practices of prayer and fasting. But this is so unexpected that I am convinced that the greater part is received as a gift from God given in answer to the prayers of so many. I am experiencing the gospel in deeper ways.

What about those socks? A family that I’m not sure we even know sent a pair of socks with lightning shaped slices of pizza on them. Their quirky gift hit the mark. Peter pulled those socks on immediately. Combined with his T-Rex shirt his clothing attracted a lot of comments and drew a lot of laughs. When you know there is resurrection, laughter is appropriate even in times like this.

Radiation and Silliness

Peter got one dose of radiation on Friday. He will get another each day Monday to Friday. The swelling is less and he is feeling better. He should be out of the ICU and back on the oncology unit in a couple days.

Yesterday and today we have had friends visiting. They drove down from Washington to be with us and take a vacation during their spring break.  Peter has been having fun with them. He reminded me today that when we stayed with them for a night last summer his friend set the alarm for 5:00am so they could get up early enough to play Minecraft together before we hit the road.

This morning Peter was his usual silly self. It’s hard to be sad when he feels so good.

I would say today’s pig is less puffy and more perky than yesterday’s.

A gallery of mostly silly photos:

This slideshow requires JavaScript.

This evening a family that used to lead worship for our church in Delhi, CA came to visit. Thirteen people in an intensive care room is technically not supposed to happen, but we got away with it. We played a couple ridiculously long rounds of the game Things. They led worship for us in the hospital room. I’ll just say what I feel about these visits: it’s good to be loved.

Tomorrow while the younger kids are at the school room in the hospital we will begin serious Bible study and discussion about heaven, the resurrection, and the kingdom of God. Reading C.S. Lewis’s Last Battle helps jump start our ability to imagine the kingdom.

On the Edge of a Cliff (for the third time)

Three times we’ve received bad news. Each time there is a treatment that might get rid of the cancer, but each time the chance of it working is less. We are at that point again.

I wrote about some of the strange symptoms Peter was experiencing over the last few days: ringing in his ears, pain in his shoulder, pain in his feet. Yesterday I noticed the area around his eyes getting puffy. Today his whole face and his arms got swollen. He complained that something in his throat felt weird. The doctors decided to hold off on chemo to see what was going on. First they order an X-ray, then followed up with a CT scan. It’s not an infection. It’s cancer. The tumor has grown. Again. Already.

His airway at one point is constricted to 3mm. Some veins draining the blood from his head and arms are being squeezed, which is causing the swelling. They rushed him to start radiation this evening, the staff staying late to do it.

For the first time, Peter was feeling scared and worried today. For good reason. The only shot left is for three uncertain parts to all work perfectly in succession: radiation, chemotherapy targeting the specific mutation driving the growth of the tumor, and bone marrow transplant. The likelihood of getting rid of the disease, in the words of the oncologist, is “exceedingly small.”

Even if we can hit this triple bullseye, Peter can expect to face a lifetime of difficulty. Each piece has its difficulties and its complications, both short and long term. Radiation will most likely cause tremendous pain in his throat. It might be impossible for him to eat for a few weeks. His heart and lungs will also be damaged, as they will also be irradiated. Chemo causes long term side effects of varying types. And a bone marrow transplant will lead to many complications too.

So here we are grieving again for the third time. Each time the chance of healing is smaller. While talking with the oncologist today, I thought, “How much of this can I handle?” The oncologist said, by the way, that he is “kind of angry” because this tumor has not responded at all the way he expected it too. Personally, I just feel sad.

I am a little unsure how much of our struggle and sorrow to share in this kind of forum, but if you are reading it’s likely because you share in our sorrow in some way. We would like you to also share in our hope. We do of course have some hope that the treatments will be effective. That is possible. And we have hope that God might respond to the prayers of so many and heal Peter miraculously. But more than this we have the sure and certain hope of the resurrection. Peter, despite some understandable fear, shares that confidence. While asking for healing, we are preparing Peter for heaven.