For Jacob

I normally keep a thin veil of privacy between my blog and my church. I call the church I serve “Tiny Church,” and I don’t normally use names. Yes, this blog is public and I’m easily Googleable. But that separation feels important.

I am relaxing that already thin boundary today because so many of you have been following the family in our church whose sweet boy died a few weeks ago. You’ve been praying for them, holding them in the light, thinking good thoughts, etc. You’ve also supported me, which in turn helps support them.

I am also posting this because the family has been very generous in sharing their story on their CaringBridge site, and I expect this message will be posted there in the coming days. Here is what I said on Saturday.

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Matthew 13:31-32 He put before them another parable: ‘The kingdom of heaven is like a mustard seed that someone took and sowed in his field; 32it is the smallest of all the seeds, but when it has grown it is the greatest of shrubs and becomes a tree, so that the birds of the air come and make nests in its branches.’

John 14:1-6‘Do not let your hearts be troubled. Believe* in God, believe also in me. 2In my Father’s house there are many rooms. If it were not so, would I have told you that I go to prepare a place for you?*3And if I go and prepare a place for you, I will come again and will take you to myself, so that where I am, there you may be also. 4And you know the way to the place where I am going.’* 5Thomas said to him, ‘Lord, we do not know where you are going. How can we know the way?’6Jesus said to him, ‘I am the way, and the truth, and the life. No one comes to the Father except through me.

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There’s a bit of scripture that talks about how God writes the truth on our hearts. A friend this week was telling me an old story of a student talking to the rabbi about this verse. The student says, “Why does God write on our hearts instead of in our hearts?” “Ah,” the rabbi said. “God writes the truth on our hearts so that when our hearts break, the truth can fall in. And take root there. And become real in a way that it never was before.”

We are here as people with broken hearts. The hurt is especially acute because this wound is not altogether new. An old hurt has been reopened. We are broken in a place that has already been broken once before, almost three years ago, when we said goodbye to Eric, sweet and golden Eric. It hurt terribly to say goodbye to him, and it hurts terribly today. It hurts because we will miss Jacob–do miss Jacob. And it hurts because his death violates our sense of the way things are supposed to work. There is something deeply not right about all of this.

And so we come here, hoping that the words of the rabbi are right. In the great wound that Jacob’s death leaves behind, in the terrible hole that he leaves in our lives, we are here in the hopes that God might pour in just enough grace, just enough courage, just enough comfort, just enough strength, for the living of these days.

I visited with Bob and Leslie earlier this week; it was a beautiful day and we sat on their back porch. Those of you who know Bob know that he always has a home project going. And so this back porch, already comfortable and fine, is still under construction. The siding on the house hasn’t been painted. There are some exposed beams. And I realized that this is what life will be like for them, for us. Learning to live without Jacob, building a life without him, is a project that will take place for a long time. There will be exposed places. It will feel incomplete. One part of the job will be finished and another part will begin.

And I was reminded of Jesus’ words to his friends, in a time of great stress and confusion and despair: Let not your hearts be troubled. In my Father’s house there are many rooms.

And I’ve always pictured that house as a finished product, a heavenly mansion with everything in its place. But maybe that’s not the kind of house that Jesus has in mind. Maybe that’s not the kind of house that you need right now. Maybe you need a house that’s always evolving, always becoming ever more beautiful, more functional, more comfortable. God the master builder will provide lots of different kinds of rooms for the needs of the moment. There’s a room for weeping–that’s probably a large room right now, but it will not always need to be so large. A room for laughing–I expect that room will grow over time. There’s a room to feel numb. A room to rail at God. A room for joy. A room to ask why.

A room to share stories.

And oh, what rich stories we have to share of Jacob!

Jacob, who was always very much his own person.

One of the instructions we received in planning the reception is that this be a chocolate-free reception, because Jacob did not like chocolate. Now I have to say… normally I would view such a person with great suspicion! I’m just not sure how I feel about that! But it’s a testament to how winsome Jacob was that he and I got along despite this quirk of preference…

I could always count on Jacob to provide the most off the wall comments during my children’s sermons, sitting there in his sweater vest and tie that he picked out himself.

Some of you may have read the note on the CaringBridge site about a little boy a few years ago who was nervous about going to school for the first time. But he came home that afternoon ready for more because he had met a boy named Jacob, who had a great laugh that made him feel like kindergarten was going to be OK after all.

It was that smile, and that forthrightness, that led him to make friends not just with people his own age, but also the office staff at [the elementary school] when he would come in throughout the day to take his medication for ALD.

And it was that boisterous spirit that got him in trouble on occasion. I’m told that Jacob once had a disciplinary issue at school because he was disrupting the class… by hugging the other kids.

It is that spirit that allowed him to make so many friends in Minnesota, both at the Ronald McDonald House and at the hospital. Bob and Leslie will be the first to tell you that the staff at Amplatz Children’s Hospital are truly amazing… but having been there twice to visit, it was evident the special affection the staff had for Jacob.

He was a boy of courage. I’ve said many times that he did everything that was asked of him in this journey, and he did it with resolve and pluck. Whether it was riding a bike around the hallways in physical therapy, or trying to eat solid food, or withstanding the pain as the doctors found the right combination of medication, or swallowing a pill cam, he did what the moment required and for that, we must never forget him, must never cease to be inspired by him.

And he was a boy of wisdom, maybe even an old soul. He once told his mother, “You know, I’m going to get to heaven before you.”

It is wrenching, yes wrenching, to think about an 8 year old making this statement. But it was also a comfort to know that in the end, there was no fear. Just the assurance, the faith of a child, that ALD would not have the last word. That there was a mansion that awaited him, and a big brother to show him the way. Jacob knew that he was loved—that he had a big sister who once had to write an essay about her favorite possession and she wrote about her brother Jacob. And he was loved by two parents who were there when he came into this world and who were with him when he went to the next.

You did right by him every step of the way.

* * *

I want to talk for a moment to the rest of you, those not in the immediate family, and if I may beg your indulgence for a moment, I want to share a personal note. I mentioned earlier that I made a couple of trips to Minnesota. The second and final trip was just a few days before Jacob died. We still had a great deal of hope at that point, we were praying for stem cells to do their work, but Jacob was very sick, and it was hard for me to leave.

I was talking to a friend after getting home and he said, “It was good that you went.” And I said, “I know it’s not nothing, but it felt like nothing.”

And he said, “I know.” And he shared his own experience of having a serious illness. And he said, after his diagnosts, “There were people like you, who felt like they did nothing. And there were people who did nothing. And there were no other categories.”

This is a great loss. And in the face of such a loss, making a casserole may feel like nothing. Or coordinating a funeral reception. Or writing a card. Or making a phone call, in a few days or a few weeks or a few months. Or offering some tangible assistance that makes the load of everyday life a little easier.

It may feel like nothing amid such a deep loss. But it’s not nothing.

The kingdom of heaven is like a mustard seed. It is the smallest of all the seeds, it seems like nothing. But it’s not nothing. That small seed has an entire universe within it. We do not know what good can come from the small things we do.

Think about the man—we don’t know his name—a man in his late 30s, early 40s, who went to work one morning, or maybe it was his place of worship, or a community center, and they were having a bone marrow registry drive. And he said, “Hey, I’ll do that.” And he filled out a form and swiped a Q-tip against the inside of his cheek. Such a small thing. Smaller than a mustard seed. Nothing, really.

But not nothing. Everything.

That simple act set something in motion, and gave the gift of life to Jacob for 283 days. And we know not all of those days were great. Some of them were downright rotten. And we wish there had been more than 283 of them.

But there was goodness and hope and yes, not a small bit of joy in those days.
It was something.

As Mother Theresa famously said, “We can do no great things, just small things with great love.”

This world needs our mustard seeds. This family needs our mustard seeds, inadequate though they may seem. Just like that mustard seed can become a tree that provides shade for the birds, says Jesus, our small acts of kindness, of compassion, of presence, will shelter this family.

* * *

I think it was after Jacob had received the stem cells, but also after he was intubated, we didn’t know which way things were going to go, and Leslie said, “The last chapter of this hasn’t been written yet.”

I knew at the time what she meant, and I still know what she meant. We didn’t know then whether the treatment was going to work or not. I used this phrase with other people when they would ask about him (and do you have any idea how many people were praying for you?). I would say to them, “The last chapter of the story hasn’t been written.”

But I’m also here to say, that isn’t quite right. Because the last chapter was not whether Jacob would beat his disease. That’s the second to last chapter. We are here today in faith and hope and trust that the last chapter of Jacob’s life has always been written, it was written long, long ago, and it is being told right now, on another shore and in a greater light.
The last chapter is not death, but life.
The last chapter is not disease, but wholeness.
The last chapter is not struggle, but unity with God.
The last chapter is not despair, it is falling into the arms of our loving God.
The last chapter is not pain but peace.

Thanks be to God.