CPN | A Rare Friendship

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A Rare Friendship


My friend Liz lives ten miles north of me. The journey between our homes can be made on a highway, but the more direct route hugs the blue-gray coastline of the Salish Sea. Densely populated stretches of land alternate with forests that cascade down hills towards the sea, lining narrow beaches. The Olympic mountains dominate the western horizon and shield us from the open ocean. Our inland sea is gentle, providing shelter to marine life, boat traffic, and us.  

I met Liz, not because we lived 10 miles apart, but through impulse born of desperation. In the unhinged, delirious weeks of grief that followed my son Lucas’s death, I roamed the streets and the internet in equal measure. On the streets, I wandered aimlessly. I often ran to the water. The sea, it turns out, is a good place to scream. Train tracks run along many beaches, and between crashing waves and thundering wheels, there is space for the primordial howl of grief.

On the internet, I searched for someone, anyone, that had lived this journey. Who understood the forces that had shattered our lives. No one I knew understood what it was like to fight for your child for two and ½ years, and then abruptly experience their death.

I found Liz on the internet, where she wrote about her son Colson. I learned that Colson died from the same rare mitochondrial disease that killed Lucas. Improbably, Liz lived nearby.  Maybe, I thought, she could help me? When I reached out on social media, I was surprised that she wrote back right away.

Liz suggested we meet at a coffee shop near the sea. As we set our things down at a tiny table, she looked at me with understanding and offered a wordless hug. No one had looked at me like that since Lucas died. No one I knew understood. The invisible cord of tension wrapped around my chest loosened its grip, and I found myself crying on her shoulder. She did not pull away.

We talked for hours at that tiny table. I learned that Colson died two years before Lucas. At the same Children’s Hospital, in the same stretch of early December. Colson was a beautiful little boy with soft, pillowy cheeks and blue-gray eyes that reflected the sea on a sunny day. He and Lucas were very different, but they also had much in common. A diagnosis, doctors, many medical complexities.

In our conversation, Lucas was welcome. My gregarious, smiling boy. I could share his whole story: the devastating diagnosis and resultant suffering, his bubbly personality and beautiful life. When I stumbled through the parts of Lucas’ story that I find most excruciating, Liz met me with kindness and compassion. Before I left, she pressed books into my arms and gave me another hug.

Driving home, I felt a subtle shift, a sense of relief. Nothing had changed, but I was no longer alone. Liz had offered new guideposts for grief, in the forms of books and ideas and her own tenacious grip on life. And beyond guideposts, I realized that perhaps Liz had offered me something else. Was it possible that in this awful life without Lucas, I had also met a friend?

Adult friendships are not easy to make. The easy camaraderie of high school and college does not necessarily translate to the rhythms of adulthood. If you become a parent, your adult relationships are often shaped by your children. As a rare disease parent, the only friends that will remain are those that choose to learn this new life alongside you. They will be a different kind of rare. You will conclude (once again) that rare is wonderful.

Liz and I are very different, but like our sons, we have much in common. We are both the eldest of six children. We believe donuts are an essential food group. We grew up in strict faiths that we no longer observe. Perhaps most importantly, Liz and I share a passion for poetry, for reading, and for writing. She is a skilled writer and omnivorous reader. A few months after we met, she introduced me to a literary arts community, helped sign me up for my first writing class in years, and encouraged me to blog in this space for CPN.

We often meet near that coffee shop and walk along the sea. When I saw Liz most recently, we stayed out on the wind-whipped coastline until we were stuttering with cold. A train went by, drowning out all conversation. I did not feel the need to scream.

As I told Liz, I have only just begun to grasp that Lucas is dead. Fourteen months into a life I do not want, I see that I cannot will him back. He is not just in the other room. In understanding Lucas’ absence, I see his presence in different ways. Perhaps it is inevitable that I would see this friendship with Liz as a gift from Lucas and from Colson.

Would I rather have Lucas back than any gift? Yes, a thousand times over. All bereaved parents would tell you that. Am I simultaneously and profoundly grateful for this friendship forged in grief? Yes. These realities can co-exist, if only because they already do. One does not vanquish the other.

In a week where many people celebrate love and friendship, I celebrate a rare friendship. A friendship that offers a gentle place for grief. A sheltered sea, perhaps, when so much else feels like traversing the open ocean.

I know this friendship was made possible by our deep and abiding love for our two rare boys. Lucas and Colson, it is because of your unique and irreplaceable lives that we are here. That a new friendship was formed. The words fall short of their meaning, but I’ll say them anyway: We love you.   

Kim Gilsdorf writes 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.

Kim is a CPN Blogger in Residence, an opportunity available through support from Sanofi.


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