BY KIMBERLY GILSDORF

The streets near my home in Seattle are checkered with apple trees, and the smell of their fruit fills the air. Apples start to litter our sidewalks and streets in September, where they are crushed by kids racing bikes around the neighborhood. School is starting soon, and the air is filled with chatter and anticipation. 

The anticipation I feel smells more like dread. September holds reminders that I am not ready to face: of changes I was powerless to stop, of loss that I could not predict or control. If you have a child with a terminal disease, with no opportunity for treatment in their lifetime, you know this swirl of anticipation and dread. 

Last September was the final fall my son Lucas would experience, though we did not understand that at the time. Every day between now and the 1-year anniversary of his death in December holds complicated reminders of disease progression. 

Sometimes, walking through the house, I am transported back to last fall. The shoes I wore walked quickly then, driven by caregiving responsibilities. My mind reverberated with worry, terror, exhaustion, and love. On the evenings we made Lucas laugh, on the days family showed up to help, our relief and joy was profound. I can still feel the push-pull between what I wondered about his health, and what I wanted. I can feel the weight and comfort of Lucas in my arms. And then, in an instant, he’s gone. I rush to his room, frantic, but I only find my own grief. 

Then I’m pulled forward into this September, the one happening now. Lucas’ sister is calling me. She is a delightful five years old, exploding with energy, creativity, and curiosity. This month she starts kindergarten, and her anticipation is colored almost entirely by fear. 

At age five, a child’s understanding of death is opaque, not fully differentiated from separation. Since Lucas died, Sophia often panics when we are apart. In Costco last week, I walked a few feet away from the cart where she sat, searching for something in their enormous freezers. I heard her scream and rushed back across the aisle to pick her up from the cart, where she had dissolved into hysterical tears. As I crouched in the swirl of Costco, hugging and rocking her, I felt guilt, and frustration, and a bone-cracking sadness. Eventually we disentangled and finished our shopping, sticky with tears and sweat. This week, I answered her questions about when I am going to die with false confidence. I understand that her fears are an age appropriate response to Lucas’ death. 

Kindergarten arrives. We talk to the principal, counselor, and teachers. Her school welcomes us with grace and kindness. They amend schedules and routines to reduce anxiety, they share their own stories of grief.  We adults do all we can, and I know how fortunate she is to receive this thoughtful support. Still, my heart aches when I see how deeply she misses her brother, how changed she is by his death. 

Sophia informed me recently, with sadness and resignation, that she’s not a big sister anymore.  When I protest, she insists: “My baby brother died.” And then she falls silent, impervious to my attempts at comfort. I could not answer her plea last December to “bring my Lucas back.” I cannot make her see herself as a big sister today. 

We never required that she help with Lucas, but she took pride in caring for him. We marveled at how easily she found ways to include him in play, even as he lost abilities and she grew. In September last year, Lucas liked to lay on the floor and watch her bounce around the room. He couldn’t sit up on his own, so one afternoon, she invented a “peek-a-boo” game that worked from his vantage point on the floor. I can still hear his breathless laughter, mixed with her triumphant giggle. I can see exactly where he lay on our floor, his little arms waving with delight. 

It is easy to forget how deeply children grieve, because they don’t talk about it like adults. But they grieve as deeply as we do, and my daughter will carry grief with her forever. It will shift as she grows. I know it won’t always look like separation anxiety and sensory overwhelm. Someday she’ll understand death as permanent and distinct from separation. Someday she’ll ask more questions about Leigh Syndrome and mitochondrial disease, and I hope we can raise awareness and funding for a cure together. Someday she’ll tell her own story about Lucas, to whomever she chooses. It will always be her story. I only see it dimly, through the lens of being her mother. All I really know is that Lucas: his laughter, his presence, his absence — will be with her always. 

As I hug her goodbye on the first day of kindergarten, I simmer with my own emotions. Why must she navigate the rest of her life without her gregarious, smiling little brother to cheer for her and give her a hug? Why am I supporting my grieving daughter instead of advocating for my living son? Why are so many disabled children like Lucas left behind and excluded by their school districts, hamstrung by inadequate funding and policies? I kick the wood chips on her playground with disgust. I am angry. I am angry that Lucas is dead. 

I pause, and take a deep breath. I feel the tension rising in my chest, the ache of living at once in two Septembers. The one I wanted, and the one I am in. The one where Lucas was alive, and the one where he is dead. I know my task is to integrate these Septembers. I sift through memories and emotions. I hold him as close as I can, while I watch her change and grow. 

** For more on supporting grieving children, our family has appreciated resources from the Dougy Center and @child_life_grief_notes.  CPN also has many resources to support the sibling.

Kim Gilsdorf writes, runs, and lives with her family in Seattle, the traditional land of the Duwamish people. She works for Perigee Fund, an organization dedicated to supporting early childhood mental health. Her favorite title is “Mama” to her two children, Lucas and Sophia. Lucas lived with and died from a rare disease, Leigh Syndrome, and his life has forever changed the meaning and purpose of hers. You can find Kim’s writing on Instagram at @kgilsdorf.