Eight years ago today, Avery Huffman took her last breath on this side of eternity. Avery was and is the third child of one of my oldest and dearest friends. On a summery Tuesday in 2015, when Avery was just six years old, she was diagnosed with a childhood brain cancer (DIPG). Seven months later, on a cold Tuesday in 2016, she died. Every Tuesday since then, her family reclaims Tuesdays by posting about Avery. They write about her life, her death, her disease, and about the work of the foundation they created to raise money to fight the monster of DIPG.
This past “Avery Tuesday,” Avery’s dad (sports journalist, Brandon Huffman) told a story of when Avery was four years old. Their family was enjoying a winter holiday near Snoqualmie, Washington. Avery and her older siblings were tubing down a snowy hill and walking back up, over and over again. One of Avery’s downhill runs ended with her flipping out of her tube and faceplanting in the snow. A bit disoriented and scuffed up, Avery had a difficult time rescaling the hill with her tube. She kept stumbling, but refused the help of her older siblings. She was going to get up that hill by herself.
Brandon writes: “Figuring by the time she got up the hill, she’d have an emotional break down over the crash and the stumbles, she instead walked right past us and ignored us, and went right back down the hill, albeit much more successfully.” Up and down the hill. Again and again. “She had proven her point—she was a determined little sucker,” her dad writes. Falling and stumbling “didn’t deter her, only motivated her more.”
Those of you who read my blogs regularly know that my oldest daughter, Samara, also had cancer. Unlike so many children with devastating diagnoses, the past tense verbs we use are about her cancer and not about her. Samara had cancer as a baby. And now, at seventeen, she is alive and well—studying calculus and philosophy in her final semester of high school and making decisions about where she wants to go to university.
On days like today, I wrestle with the incomprehensible unfairness of Samara’s aliveness and Avery’s not-aliveness. I think about cancer and the monstrosity that it is. And was. In Avery’s brain. In Samara’s liver. In my mom’s lungs. In my sister’s brain.
When Samara was in her fourth year, her chemo treatments were three years behind her already.
In the wee hours of a winter morning, she padded to my side of the bed to let me know she had to go to the bathroom. Off we went and Samara struck up a conversation (as three-year-olds do at 2:00am). “God made my cancer,” she said. “And gave it to me.”
Wait, what?
I know she said this, because I recorded it, but I don’t remember her tone. Was she upset? Dreamy and foggy from sleep? Matter-of-fact? Or perhaps simply pleased with herself to have arrived at such a natural theological conclusion, given her knowledge that God made the world and everything in it?
But did God make Samara’s cancer and give it to her? Did God make Avery’s cancer and give it to her? Look, I’ve wrestled with the difference between God’s active and permissive will. And I’ve spent time with Lord’s Day 10 of the Heidelberg Catechism – the questions and answers about God’s providence. The most recent translation reads, “All things, in fact, come to us not by chance but by his fatherly hand.” The previous translation claims that all things come to us from his fatherly hand. By God’s hand or from God’s hand?
At times I’ve concluded that the preposition makes all the difference. If things come to us from God’s hand, God sounds more like the originator and active agent of the devastating things that happen to us. If things come to us by God’s hand, God sounds more like a permissive agent (which is a bit more palatable), who allows these things to happen for some mysterious reason.
And before you know it, we’re in the land of talking about everything happening for a reason, where God allows these awful things to happen in order to bring about other things that are a part of God’s overall plan. For some people (and sometimes for me), this is comforting.
But does everything happen for a reason? For a God-ordained reason? That’s partly right, according to a friend of mine. But perhaps it is more true to say that things happen for lots of reasons! (And yes, my friend is using the preposition ‘for,’ in a different way than its common usage in this phrase!)
Things happen for lots of reasons! There are lots of factors and reasons that contribute to any given thing happening. There are so many hands that touch the circumstances of our lives… God’s, of course… but also Satan’s (Job 1:12, 2:6), and our own hands. And there are lots of things – even good things – that flow out of the heartbreaking and earth-shattering events of our lives. But are the lessons we learn or the foundations we set up or the new relationships that develop in the wake of tragedy reasons for the Horrible Things to have happened? Or are they simply ways that we work together with one another and with God to bring about as much life and hope and healing as possible.
Samara as a little girl knew that God is a God who creates and God is a God who gives. And for her, her cancer was a story full of healing and love. How could God not have been the originator and giver of all of this?
Still today, Samara confesses a God of creativity and gift. We don’t know all the reasons that the cells in Samara’s body started multiplying in a cancerous way. There are probably many. And in the wake of her cancer, many things have happened in her life and in our life to bring about hope and healing. Samara now wants to study medicine and become a doctor – perhaps in paediatrics or oncology, or perhaps in the field of research. She knows that the story of her cancer and survival is an incredible gift that can bless the world. I, for one, do not need to say that this vocational trajectory is The Divine Reason Why her cancer happened. As Professor John Cooper said to a Calvin Seminary apologetics class in the days following my first husband Layton’s death in a car accident: No matter how much good comes in the years to follow Layton’s death, it will never add up to the value of his life.
Avery’s parents, Brandon and Amanda, have also taken the story of Avery’s life, disease, and death, and have worked with each other and others to bring about hope and healing. They never miss a chance to testify to God’s goodness and care throughout Avery’s fight with cancer and in all the years since then.
They keep climbing up the hill, undeterred from their goal to defeat DIPG. Ever-motivated to find a cure. As they raise funds and emotionally and spiritually support other families facing this diagnosis, they reflect God, the Creator and Giver. They reflect the Spirit who heals and comforts and helps us to find ways to heal and comfort. And they reflect Jesus, the one who walked determinedly up The Hill for so many reasons, and in the wake of whose death, we have hope and healing and life.
Header Photo: A pink and green balloon – Avery’s favourite colours.
Oh my God, Heidi.
In Mark’s Gospel, Our Lord has a dialectical relationship with Chaos, with the threatening, dangerous, and terrifying world just beyond our flimsy boundaries of safety and control. The demons, the desert, the wilderness, the sea, the wind and waves. He is the one who saves us from Chaos, and yet right after his baptism Our Lord went out into the wilderness and was among the wild animals, as if there was nothing to fear. And yet again his own power terrified his disciples, and three times when he predicted his death and Resurrection his disciples were terrified. Our Lord brings his own chaos into our controlled world. And Our Lord does not settle the reasons.
Daniel,
Thank you for this insight. Do you know of a place–book, article, or sermon–where this theme is explored further?
This is my typical mix, from a combination of Werner Kelber as quoted by a local preacher who is one of the brothers at the Order of the Holy Cross, plus Northrup Fry’s book The Great Code, plus the late Dutch theologian Oepke Noordmans.
Yes to all of this. The chaos, the mystery, the complexity.
Thanks, Heidi, for sharing your heart, history, healing, and hope, especially during Lent.
Thank you Heidi. When our son Dylan died, many people offered words intended to comfort us, and in most cases the words (and silent presence) were comforting. But one man, a member of my congregation, said to me, “You’ll be a better pastor because of this.” I’m still shocked that he said that while our son’s body lay in the casket a few feet away, implying that I would be better able to serve this man as pastor because my boy was dead. A cold exchange like that would put God in the role of Artemis, requiring Agamemnon’s daughter’s life so that the Greek troops could reach Troy. Although the man was probably right, and it’s likely true that I have been a better pastor because my wife and I went through that heart wrenching loss, I refuse to accept that as the reason Dylan died. In fact, I refuse to accept any reason for Dylan’s death that I’ve thought of or that others have offered. I appreciate your Cooper quote, that no amount of good can add up to the value of a loved one’s life. For me, I prefer the mystery, and the certainty that in one case, and only one, the willing sacrificial death of one human life brought enough good to add up to the value of his life.
Mark,
Your words are heartbreaking. Your patience and compassion sound miraculous. I’m not sure I could have offered it. Your words remind me of Jim Cook who wrote about his experience as a secondary sufferer, as he walked with his son, who died of cancer. He wrote (and I’m paraphrasing), he never asked the question “why” for there was no answer that God could give that would justify the death of his son.
As for your parishioner, his (maybe) true words remind us that truth always has a context and the truer truth is spoken in the “context” of love (“speak the truth in love”). I sense this is a reminder for all of us when considering the “comfort” we offer. Is this “truth” spoken in love? If it isn’t, is it really true? Who is the one being “loved” in the moment by this truth?
Anyway, Heidi, thank you, I’m not sure I wanted the kick in the gut this morning, but I sense I needed it, and Mark, thank you, sometimes we need to find the truth for ourselves, like little
Avery up the mountain, and we just need the certainty that we are surrounded by those who love us (God, family, friends, others), as we climb and stumble up the perilous mountain in front of us.
Mark, I’m with you in your lack of desire to name or explain why awful suffering happens to our kids, and subsequently, to the rest of us. Philip Yancy says “There must be something that matters more to God than protecting us from suffering.” That’s the mystery that I’ll delve into, because it’s the mystery of Love, rather than spending my energy trying to find reasons for the suffering.
Thank you, dear Mark, for reading this essay through your own story… for telling your story in the midst of my words. I am completely with you in the resistance to the Cold Exchange and the refusal to accept any de-complexifying of the terror and beauty of life and death (even Jesus’ life and death) with a reduction to a Reason or even many reasons. With love for you and Dylan and all who loved him and love him still.
Thank you Heidi. I have just started reading Jeff Monroe’s book, Telling Stories in the Dark, and this essay will be tucked in the back.
Peace be with you.
Amen. And thank you.
Hi Heidi, Thank you for this article. My sister, Norma, posted your article on Facebook. Her great grandson died of cancer about a year and a half ago.
I also remember the day your husband came into the church office to tell of his urgent visit with Samara to the doctor the day before because she seemed to be in so much pain. I’m so glad she is now cancer free and has been most of her life.
Thank you. Our Sarah died of leukemia when she was 38. The 18 months from diagnosis to death was a beautiful and anguished journey, and without answers. And yet…. In it and through it Gods presence and love was there. Mystery and love – two words whose meaning deepened and continue to deepen a decade and a half later. Your writing was another moment of remembering and feeling both the pain and the gratitude. Again, Thank you. Karl
As the member of the translation committee who suggested the change from “from his fatherly hand” to “by his fatherly hand” in Heidelberg Catechism Q/A 27, I would like to thank you, Heidi, for your splendid essay and your reflections on that change. We made the change, of course, based on our understanding of the original German text, but it might also be, as you say, “a bit more palatable” theologically. What makes the phrase less than fully satisfactory, however, is that the preposition “by” has the sense of “by means of,” which still suggests active divine agency. What may cushion the implications of that way of talking about God’s providence is that the hand of God is described as a “fatherly” hand. That term points back to Q/A 26, which assures us that “the eternal Father of our Lord Jesus Christ . . . is my God and Father because of Christ the Son.” And it points ahead to the promise in Q/A 28 that “we can have good confidence in our faithful God and Father that nothing in creation will separate us from his love.” In all the chaos, mystery, and complexity of divine providence, there is also divine love.