11.29.2022

I understand why parents who have lost a child stay busy. When my mind is on meetings or presentations, I leave only just enough space to briefly drift to thoughts of Mila and how my life unfolded in the way that it did. Then I'm back to work. 

As soon as I stop and sit back, Mila's dark eyes and wide smile appear. In those moments of stillness, the depth of joy and pain and their sharp contrast overwhelms me. It can be so heavy. Only when I make the time to go up the mountain and walk through the trees do I feel at peace. The thoughts come and go, they flow through me without getting stuck or weighing me down. I don’t need to turn the switch on or off. As I walk and look up and around at the trees, the rocks, the sky, I feel small and insignificant. Just another piece of the earth. The wind blows, the stream trickles, the plants grow and die. I feel Mila. I feel my mom. This is where I go to be reminded that somehow it will be ok.

11.16.2022

Last week was Mila's birthday. Some of her friends came over to our house to sing songs and eat Olaf cupcakes that Azlan decorated. These girls are twelve now. Their arms and legs have grown long. Their almost teenage faces have become thinner. Their personalities are becoming their own. I can't help but wonder what Mila would be like today if she hadn't lost the genetic lottery when she was conceived. Some days, I let myself imagine what it would be like. Today, I prefer to think of Mila at 8, frozen in time, smiling from the love that she felt from around her.

11.01.2022

I spent three days in the New Mexican desert at a Loss of a Child workshop. I hadn't wanted to go. My grieving had felt healthy. I had talked about Mila, cried to her, laughed at the memories. But something nudged me to go. When I walked into the living room full of faces like mine, I looked around and let go. I cried harder than I ever have, for days. At the end, I placed a photo of my Mila bug on the wooden floor next to the others and lit a candle. My pain was desperate, but I could feel I had taken a big step forward.

During the workshop, my mind took me back to a moment in sixth grade, standing in a church listening to the booming lyrics of the '70s song, "Joy to the World". I was at the funeral of Adrian, a ten-year-old boy at my school who had died in a car accident. As they played his favorite song, I studied his parents' faces, and watched as his sisters bowed their heads. For 35 years, I hadn't been able to listen to this song. Until I walked out of the workshop, wiped my tears and stepped into an Uber. Just then, the song began to play, "Jeremiah was a bullfrog...”. Here I was, in the place of Adrian's parents. The song sounded differently to me now. I let it play.

10.04.2022

I spent the day with Cecilia and Myleese, two girls with Batten Disease. Mila would be their age today. Cecilia uses a cane and her mother's arm to guide her. When I meet her, she tells me she's sad that Mila died. She knows she has Batten too. Myleese is confined to a wheelchair. She is one of only five children in the US, perhaps fifty in the world, with Mila's very same type of the disease. Her eyebrows are thick, her lashes long and dark, and her face a teardrop shape like Mila's. I'm breathless. I put my hands on her and feel her warmth, and for just one moment I'm with Mila again. A small, but powerful gift. The tears flow, but I pull myself together for them, as I did for Mila. I smile, even if they can't see me.