CPN | The Endurance We Didn't Choose

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The Endurance We Didn't Choose


Before Lucas was born, before he was diagnosed with two rare diseases, and before he died, I was an amateur endurance runner. 

Endurance running was a gift. It required my focus, and released me from daily obligations. My mind and body carried me further than I had imagined possible. Across snowy glaciers and rocky moraines, hard climbs led to expansive views and moments of deep joy. 

I mostly put these pursuits to the side when I became a parent, though I still loved to take my daughter hiking. I ran short loops, close to home. The loops became even shorter and closer after my second child, Lucas, was born. By the time I felt like running again, I knew that something was seriously wrong with Lucas’ health. I was consumed by the effort to find out what was wrong, to help him stop vomiting, to figure out why he was so weak. When he was hospitalized for failure to thrive at 1 year old, and received a devastating, terminal diagnosis with no treatment, my focus on his care intensified. My husband and I wanted to help Lucas have the best life possible. We wanted him to enjoy his days. We wanted to make him laugh. Oh, how we loved his laugh! We wanted to minimize his suffering. Everything else faded out of sight. 

I still ran, mostly to keep from falling apart. Outside, my mind and body worked together in familiar rhythms. My focus was not on ascending mountains, but on the subjective experiences of Lucas and his big sister. Everything felt high stakes, and I was profoundly underprepared. On the runs, I would try to sort through complicated care decisions and emotions. Sometimes I just put one foot in front of the other. 

I remember one of these runs vividly. Lucas had been screaming inconsolably whenever I set him down or left his side, though he seemed mostly OK when I was with him. I couldn’t figure out what was wrong. And I couldn’t hold him all the time. I wasn’t just his mom, I was his caregiver. There were medication and formula changes to navigate, feeding tube routines to adjust, therapies at home and in the clinic, research to do, advocacy for his care, appointments that needed scheduled or moved up. I had another child, a husband, and a part-time job that all needed my attention and care. Tired and frustrated, I felt like I was failing everywhere. 

There was no time, but I sneaked out on a run anyway while Lucas napped, and my husband kept watch. I was looking for space to sort through symptoms and emotions. It was clear Lucas felt deeply upset when I wasn’t holding him, though other trusted caregivers could help. Looking back, I see now that his disease was progressing faster. He was losing strength and skills. Speaking was very difficult, so he couldn’t ask me to stay, or perhaps he felt like I wasn’t listening well. Either way, every temporary separation from his mama in the context of his inability to move or talk seemed devastating.

On that run, I realized that while I couldn’t take away the disease, I could do something. Even if it was very small. I decided at bedtime that night, I would focus on his experience of our relationship. I would work to connect with him, to make bedtime extra beautiful. I would help him to know that I cared about him deeply. I put aside the to-do list and messages waiting for a response. 

That night, I held him close, and read every one of his favorite books. As I read, I found myself weeping. Holding him on my lap, I wept for all the things I could not fix. I wept for his feelings of frustration, and for my own. I wept because I loved him so deeply, because he was perfect and beautiful, and because he was not going to be OK. I rested my cheek on his head and let my tears run into his hair. 

When we had read all the books, I cradled him like a little baby and kissed his cheeks until he smiled from ear to ear, just as I did every bedtime. I told him how much I loved him. I asked him to forgive my frustration. I can never know how much he understood, but his quiet presence and steady gaze told me that he loved me too. That I would always be his mama. That I could not fix this awful disease, but I could do something important. As I sang him to sleep, I felt grateful for the beauty of being present with him, even when it hurt. 

Lucas has been dead for five months now, a sentence that is excruciating to write and to live. I can never cradle him in my arms again, never ask in the same way for his love and forgiveness. I weep every day, but not into his soft hair. I can’t kiss his perfect cheeks. While I believe that a parent’s bond with their dead child continues, the devastation of his physical death is excruciating. He was only two and a half years old when he died. I feel robbed of time, desperate to have him back. 

I thought I knew a lot about endurance, but enduring the grief of Lucas’ death feels more like sitting in an active forest fire than going on a long mountain run. I try to stay present, amidst the heat and crackling branches and flames. Some days it is too painful, and I just close my eyes, willing the nightmare to end. I didn’t choose this. I might be learning something, but I really don’t care. I would give it all back in a second if I could hold my son again. 

A few weeks ago, family and friends included me in a trail relay race in the mountains. I didn’t want to leave home, where Lucas feels closest. But I was signed up for Team Lucas, named in his honor. We made the drive. I started my leg under the blazing sun, my 5 year old daughter waving a little sign with Lucas’ face to cheer me on. 

Out on the trail, I felt relieved when the physical effort quieted my churning brain. When the steep ascent mellowed into a meadow, one clear thought emerged. “I would give anything to be enduring another hospitalization with Lucas instead of being on this run.” The bargains with the universe that my brain invents are endless, as I try to find a way back to Lucas. This one felt ironic. Sometimes during hospitalizations, I would look out the windows, wishing Lucas and I could be outside on a run in his stroller. Neither of those wishes can ever come true. 

As I ran, I wondered what another hospitalization would feel like for Lucas, if my bargain with the universe worked. His primary diagnosis was a mitochondrial disease called SURF1 Leigh Syndrome. (He also had a rare allergy disorder, Eosinophilic Esophagitis). The spectrum of how Leigh Syndrome presents varies widely across affected children, but it is a serious, terminal, neurological disorder. Many affected children die within two or three years. Like all mitochondrial diseases, it dramatically impacts energy. Your body cannot make the energy it needs, and as your body grows and requires more energy, symptoms often become worse. In short, living with Leigh Syndrome requires profound endurance, just to show up every day. It isn’t the kind of endurance activity that someone signs up to do. It is not fun or rewarding. It’s devastating. 

I thought about how Lucas showed up fully, every day. He would smile at me when I bathed him, delighted with the feeling of water, even if it were the third time that night and he was exhausted and dehydrated from vomiting. There were many nights he came joyfully to the dinner table in his adaptive chair, even when he could no longer eat by mouth. He always wanted to be included, and we wanted him with us too. In his last months, he kept his eyes wide open when they struggled to focus, determined not to miss a single thing. He always tried to lift his arms for a hug, even when his tremors were so pronounced that he wobbled and collapsed. 

I’ve always thought of endurance as a dance between your body and mind. But showing up every day in the midst of something you did not choose, also requires a lot of heart. 

Dear Lucas, 

I love you forever. Thank you for your beautiful heart. Thank you for being so present with us in your life. You told us what you needed so clearly, and when I listened, we grew closer. I’ll always be grateful for the way you drew people to you, mostly without saying a word. Your laughter and dimples, the weight of holding you, reverberates in every cell of my body. Being your mother is forever my journey. It brings expansive views. The very deepest sorrows and joys. 

Love,  Mama 

Kim Gilsdorf writes, runs, and lives with her family in Seattle, the traditional land of the Duwamish people. She works as a Program Officer for Perigee Fund, an organization dedicated to supporting early childhood and parent 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. His life has forever changed the meaning and purpose of hers. You can find Kim on Instagram at @kgilsdorf.