09.14.2023

Last Sunday, Azlan and I presented the bronze sculpture of Mila to our family and friends. We were surrounded by faces that connected us to Mila's life, from the birthing class when I was pregnant, from a new moms group, from playgrounds, swim classes, hikes and trampolines. Faces of those who supported me in my fight for Mila, who delivered meals to us when I could barely stand, who were there in Mila's last days, and who helped make my mom's dream of a sculpture come true. After singing songs and walking through the trees, I watched as Mila's brother, her cousins and her friends bent down, one at a time, and placed little painted stones, Mila Bugs, by her feet... a reminder of the bright colorful love that has always and will always surround her.

08.30.2023

Two years ago, I started working with Anita, a local artist, on a bronze sculpture of Mila. It was my mom's idea, and my family and friends helped make it come true. Over time, the pencil drawings became small clay models which in turn grew to life-sized molds and then to the final bronze sculptures. The result was more beautiful than I could have ever imagined. 

But it wasn't Mila. I asked Anita to adjust the shape of Mila's eyes, the scoop of her nose, the length of her fingers, the twist of her foot. But no matter what we did, I realized it wouldn't bring her back. 

This summer, I made peace with the sculpture as I sat with it in my home. I accepted that it could never be Mila, but it would capture her spirit, her curiosity, her imagination, and her connection to my mom, the fox by her side. 

Last week, the sculptures were taken from my home to the playground where they would be installed and again, I found myself saying goodbye.

07.26.2023

I can't help but be drawn to girls the age Mila would have been today. I find myself staring at them, watching how they move, how they laugh, how they dress. Sometimes I let my mind wander into the future of the past and smile. Other times, the physical pain is too much, it hurts. 

The other day, I found a photo entitled 'Mila Grown Up'. I immediately remembered naming it when Mila was just 7. There was something about it that made me imagine her as a teenager, a milestone she would have reached this November. Today, Mila's now tall, thin friends with elongated faces and higher ponytails are buying their back-to-school bags and clothes and getting ready for 7th grade. All I have is this photo to imagine what could have been.

05.09.2023

(1/3) In January 2018, we moved from Colorado to Boston for Mila to begin her treatment. Just before we left, two sisters living just an hour away were diagnosed with another form of Batten disease. Lilly was six then. She was running around, playing with friends, and singing her favorite songs. Today, Lilly is blind and spends most of her time on the floor. When she finishes eating, her mother holds her hands, wipes them clean and supports her daughter as she stands.