My nephew died on Friday from a brain tumor first discovered nearly 6 years ago. After undergoing radical brain surgery and devastating chemotherapy as a 4, 5 & 6 year old, he had a few years to be, as he put it, “Just Judah. Not Judah with cancer.” 17 months ago though, symptoms began, leading to a series of horrible discoveries:
14 months ago they were told his tumor was growing again
12 months ago he was so ill he was given a feeding tube
10 months ago they discovered his tumor had transformed into a deadly, high grade tumor that would end his life in the year ahead
9 months ago he began radiation to give him a few good months with his family
6 months ago his family waited in vain for him to experience those good months
5 months ago he started an experimental treatment that could possibly save or prolong his life
3 months ago he had an amazing 2 weeks traveling with family
6 weeks ago he was hospitalized, nearly killed by the side effects of his treatment
4 weeks ago he was told his tumor had doubled in size and he had weeks to live
3 weeks ago his family rushed home to be together
2 weeks ago his parents took him to Legoland and to the beach to soak up every moment
1 week ago he went camping with family, growing more ill by the moment, but trying to hang on
5 days ago his parents told us to come home to say goodbye
4 days ago we gathered and wept
2 days ago his parents held him as he died.
Today it feels impossible to even access feelings. The grief, the exhaustion, the worry about all the kids and adults who are wrecked by the loss of this amazing boy, is too much to bear. The missing him consumes us.
There is a passivity that overtakes you when you grieve: Food appears and is taken away; faces lean in with red rimmed eyes and then vanish; arms embrace and then release; memories are shared, laughter comes; images flash, tears fall; thoughts roam but the effort to speak is too much.
Trapped in my brain, quiet, I have recognized a few moments of light.
I share them now, with every intention of unpacking them later. I hope they serve as a counter narrative to the loss, an act of resistance against the overwhelming sadness. Short episodes or thoughts, each one serves as a possible path forward, toward wonder, and maybe even hope.
8 days before her son died, my sister urged me to go do something fun, saying, “Go breathe different air. Feel joy, ‘cause joy isn’t gone, it’s just smothered by this unthinkable darkness.” In the service, my sister Ellen, reading Mary Oliver, reminded us that joy often arrives suddenly and unexpectedly, and that when it does, the right move is to give in to it. It doesn’t matter that your heart is broken and might never be whole again; when a toddler loves yelling, “Poop!” at inappropriate times, you have to laugh! Joy, she said, isn’t meant to be a crumb. It comes in plenty, always enough. Let it happen, no matter the ravaged state of your heart.
In thinking about the service for Judah, I was reminded again and again that God is either drawn to us when we are honest about our loss, our anger, our pain, our doubt, or we really have built our “faith” scaffolding on utter bullshit. If faithful worship requires 100% joy and confidence every moment then I think “faithful worship” was built in a lab wholly removed from human experience. God has to be more comfortable with nuance and uncertainty and pain than that. Thank God for theologies of lament and for Beattitudinal doctrines, and rely on them when life happens to you.
When you lose someone you love, withdrawal presents itself as a wonderful option. Stop caring. Hide away. Protect your heart at all costs. But all of that is a lie. Healing only comes with more love. Love makes us vulnerable, but it is also the only salve that heals. Expanding love also creates space for new ways to imagine family. Walking wounded with others has made us realize we have new sisters and brothers, folks who feel like family because they love big in the midst of pain. When you are wounded, love more, not less.
People are astounding, and the right response to sacrifice is gratitude, not shame. People flew home from amazing trips to stand with our family. People drove 8 hours in one day in the middle of a holiday weekend to hug our necks. People showed up, and my first response was often shame. When we “feel bad” at the sacrifice of others on our behalf, we miss the chance to feel loved, known and grateful. Look the sacrifice of others in the face, appreciate the grace and love you are given, and receive it.
The social worker from Hospice admitted that losing a child is devastating. She said we all need to pay attention to the ways grief and pain can wreck us and our relationships with others. She brilliantly added that we might also pay attention to the “collateral beauty” that is certainly unfolding all around us. What a marvelous idea! Horrible pain does damage in ways we cannot even fathom, but it also sets the stage for beauty more stunning and restorative than we can imagine. Pay attention and give thanks when it comes.
Here’s to Judah, to a life remembered and cherished and mourned by many. Here’s to surprising joy, to collateral beauty, and to sacrifice, coexisting with pain. The presence of one doesn’t end the possibility of the others. The darkness is thick and overwhelming right now, but the light remains, and I am grateful.